Genetics, Privacy, and The Web

genomeDid you know that with $399 and a tube of your saliva, you can find out your genetic predispositions for disease, personality traits, and what medications might work best for you?  Or with $149, you can check out your genetic family heritage?  How about that for less than $1,000, you will soon be able to get your entire genome mapped?

And what does this mean to you? It seems fair to say that currently, most people don’t concern themselves with their genetic profiles in their day-to-day lives.  Surely we read about genetics in the media: what genes are linked with what traits, what advancements are being made in the field of medicine with the growing knowledge of genetic information.  But our society certainly doesn’t conduct itself like the science-fiction movie Gattaca, where each person is branded with his or her genetic likelihoods from birth and assigned societal roles accordingly. We are generally oblivious to our own genetic profiles, and pay selective attention to findings about genes mostly when faced with a pressing health problem.  For the most part, we carry on our lives with little knowledge about our own genetic makeup and what that information might tell us about ourselves.

This, however, is changing.

Genetic testing is becoming more and more available and affordable, and thus more accessible to the general public.  Whereas previous genetic tests used to cost thousands of dollars and were available primarily through a doctor’s order, now an online kit and a couple hundred dollars is all one needs to access his or her genetic profile.

Want to know your genetic family history?  Genetree.com will help you find out your genetic cousins and learn about your ancient paternal ancestry for less than $150.

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Interested in the disease you may be at risk for, or the personality traits for which you are genetically predisposed? Just mail in a tube of your saliva to 23andMe.com and for $399, receive a full profile back in 6-8 weeks.

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Unlucky in love?  Check out Scientificmatch.com, an online dating service that specializes in finding your perfect match – genetic match, that is.  Scientific Match claims you’ll have “a greater chance of a more satisfying sex life” and a “lower chance of cheating” if you let their matchmaking system find you someone with compatible genes.

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Gear up, everybody: the personalized genomic revolution has begun.   And it’s not only taking place through the private companies offering you information based on small pieces of your genetic code; The Personal Genome Project is hoping to recruit 100,000 volunteers to have their entire genomes sequenced and posted online .  A handful of famous scientists, including George Church and Steven Pinker, are 2 of 10 people who have already put their entire genomes on the web for all to see, in hopes that genetic transparency will lead to better research and will debunk some of the fears people have about genetic testing.

But personalized genomics coupled with this gene-sharing mentality raises many important questions.  Today’s post asks, what issues need to be considered before you go spitting into that tube?

The Center For American Progress’s Rick Weiss gives a good overview of direct-to-consumer genetic testing in the following YouTube video, outlining what people should keep their eyes out for as personalized genetics develops.  He explains that given that we are beginning to be able to identify which genes are associated with increased risk of disease, a new wave of personalized, predictive medicine is on the horizon; but the information often isn’t easy and clear cut to interpret, and direct-to-consumer companies making tests available to consumers online “opens up a whole new arena of web based risks”, particularly in light of the lack of regulation these internet genomics companies have right now.   Watch Weiss’s overview below:

A group of leading thinkers on this issue convened last year at a forum sponsored by The Commonwealth Club entitled, “A Closer Look At Genetic Testing” to examine some of these risks that Rick Weiss alludes to.  They raised a broad range of issues that we are facing with the personal genomics revolution, in regards to privacy, ethics, and law.  Here are some excerpts of their talk:

Video 1:

In this first clip, Pacific Research Institute’s Daniel Ballon discusses the implications genetic information has for the public sphere from a civil liberties perspective.  He asks, How will genetic information be used in law enforcement when it comes to arresting and convicting people who commit crimes? Should a warrant be required to get genomic information? How might genetic information be utilized to manage public health issues? If we identify a gene that indicates someone is very susceptible to catching swine flu, for example, might the government take that information and preemptively quarantine a portion of the population which fits this profile? What about genes and national security?  Might “a genetic profile for a potential terrorist” be conceived of, and if so, could we preemptively arrest them?

The issues raised by genetic testing from a civil liberties perspective are profound, he says, and should be considered carefully by those who are submitting their genes to private databases that may be “mined” by the government in years to come.  (The Federal Trade Commission adds, “Protect Your Privacy.  At-home test companies may post patient test results online.  If the website is not secure, your information may be seen by others.  Before you do business with any company online, check the privacy policy to see how they may use your personal information, and whether they share customer information with marketers.”):

Video 2:

The next segment raises a number of fascinating questions, all predicated on the following premise: genetic information never goes away.  Unlike a social security number, which, if it gets ‘stolen’, can be replaced by a new one, you can’t simply apply for a new genome. So if you choose to get aspects of your genome mapped now, what problems might this pose for you in the future?

First, as Mark Gerstein of Yale University says, there are issues of privacy and consent, not only for you, but for your family as well. If you are getting your genome mapped to find out your risk for a genetic disease, you are not only finding out information about your own genes but about your relative’s genes, your parent’s genes, your children’s genes – even your children’s children’s genes, and so on. Gerstein says this could lead to a “hidden time bomb”, where we will in the future be able to read things into various people’s families and descendents, including about people, like children, who didn’t participate in that consent to have that information shared.  And though there are some steps being taken towards protecting genetic information like The Genetic Information Non-Discrimination Act, one wonders about potential scenarios: could a test you get now affect a grandchild’s ability to get health insurance?

Another issue posed:  Genetic testing might be seen as fun and interesting to take part in now (particularly as companies offer services like dating matches or ancestral trees) but information you find out about your genome in current early stages of genetics might pose problems for you in the future when the field becomes more developed. Stanford University Bioethicist David Magnus adds, “Things that you think right now are not problematic could turn out to be problematic” in the future.  What if you share genetic information that doesn’t mean anything now given our current knowledge base, but in ten years, is found to be linked with an incriminating mental or physical disorder?

Video 3:

Issues of eroding privacy in the internet-era, as well as the tendency for young people to be “over-sharers” on the web, characterize our generation.This last segment asks, is the web 2.0 generation going to care about genetic privacy at all?

sharescreen“In a way, it’s still an empirical question and it will be interesting to see how it plays out,” said David Magnus.  “Are there going to be people who are right now comfortable sharing but when they see all the implications, they’re gonna be nervous about it?  Or is there really a generational shift, where we really are facing a group of people…a generation where they just don’t care?”

The issues of making genomes public, as the previous two videos illustrated, are important to consider.  Will our generation treat gene information sharing much like we treat personal information now?

I’m reminded of an iPhone application in development called “MyGenome”, which allows users to store their genetic information on the iPhones, browse their genomes by chromosomes, look up reactions to medicines they may be genetically predisposed for, and importantly, to share their information with others.  A MyGenome user cannot only compare their genome to famous genomes that have been sequenced, but share with friends and family, and hypothetically, with any iPhone user within wireless range.

Other examples of gene sharing are easy to conjure: it’s not hard to imagine a future Facebook app that finds you “genetically-matched” friends, or a ‘viral’ note entitled “25 Things My Genes Say About Me” spreading around. Is this what Gerstein means when he says sharing genetic information will all start seeming fun and interesting, but will lead to us sharing information without knowing where it might lead?

Closing:

The ability to know our personal genetic information is a profound undertaking that not only transforms the way we view and treat disease, but the fundamental way we define ourselves, our public policies, and our futures.   Issues of privacy therefore seem tantamount; exercising care and caution when approaching genetic information seems not only wise, but critical.

But as the up and coming generations face a loss of privacy left and right as a result of evolving technologies, one wonders: will genetic privacy be the next to go?  And if so, what might the consequences be?

Questions:

1. Do you consider knowing your genetic profile to be an important part of knowing who you are (or who you’ll be)? Would you consider getting portions of your genome mapped?  Why or why not?

2. How do you think the “web 2.0” generation will handle the issue of genetic information and privacy?  Will they be more cautious when it comes to genetic information than they are about other information?

3. Michio Kaku wrote in his essay, “Second Thoughts: The Genetics of  A Brave New World“: “Since time immemorial, societies have committed some form of genetic discrimination.  People with obvious deformities or diseases were taunted, labeled witches (as in Huntington’s disease), systematically isolated from society…What is new, however, is that today it will be possible to screen individuals for a genetic disease even if the disease never appears.  Someone who may never suffer from a particular genetic disease may be denied insurance or a job if the person has a high probability of developing a genetic disease.” Do you think genetic discrimination will be a significant problem as more and more people get genetic tests? Would you forego a genetic test for fear of genetic discrimination?

151 Responses to “Genetics, Privacy, and The Web”

  1. Avery Reiss says:

    Genetic mapping and the human genome project have led and will continue to lead to incredible scientific advancements. The technology is amazing and the potential for growth in medicine is outstanding, but there are many ethical and moral questions that must be answered before we begin the widespread distribution of personal genomes.

    1. Do you consider knowing your genetic profile to be an important part of knowing who you are (or who you’ll be)? Would you consider getting portions of your genome mapped? Why or why not?

    The way I present myself to the world is impartial to my knowledge of my genetic profile. I will not change my self-image based on what series of nucleotides reside in my cells’ nuclei. I know that the genetic basis for my person lies in that information, but there are many other environmental factors that have influenced who I am today. I believe that many would people would be put too much weight into genetic profiles, and completely rely on them to decide “who a person really is.” The one situation I would consider having genetic tests performed is in the case of heritable diseases. If I could become aware of the onset of a disease, perhaps I could use some form of therapy to delay or reverse that disease’s development.

    2. How do you think the “web 2.0” generation will handle the issue of genetic information and privacy? Will they be more cautious when it comes to genetic information than they are about other information?

    In this day and age, the Internet and it’s users have little mercy when it comes to information sharing and privacy. Identity theft is rampant, and illegal file sharing is still a grand problem, despite some new legislation designed to prevent it. If people can find a way to exploit the presence of public genetic profiles, I believe they will. This is why I think the government needs to preemptively establish legislation on the privacy and legality of theses profiles, to establish an order and prevent any confusion on what is right or wrong.

    3) Do you think genetic discrimination will be a significant problem as more and more people get genetic tests? Would you forego a genetic test for fear of genetic discrimination?

    I do think that genetic profiling will eventually play a role in many corporations’ hiring processes. I think that again, laws should be established to prevent discrimination based on genetics. I myself would have no problem submitting to a test during a hiring process, if the aforementioned laws were already in place.

    • Victoria Vargas says:

      1. As of now, I do not see my genetic information as important because as a society we have not yet taken it upon ourselves to define ourselves through our genetic makeup. Therefore, I feel like my genetic information is of little importance when it comes to defining me. People do not see others based upon their genetic makeup and when they do in the future, then my feelings will change. Although i feel this way, I would consider getting parts of my genes mapped just out of curiosity.
      2. Based on some of the responses the people gave from web 2.0, I feel that they wont pay as much attention to keeping private people’s genetic information. Their argument of how we send tons of information through facebook and other networking engines supports their argument. As of now there is not real threat. It’s not like someone will steal your genetic information and ruin your credit score It doesn’t work that way. Because we all have distinct information, it is very unlikely for someone to use your information against you to hurt you.
      3. Yes, in the future genetic discrimination might become an issue as more and more people use genetic information. Your personal information might reveal your flaws, which in my perspective shouldn’t really matter because its not the genes who define a person, but what aspires the person to be who they are. I think I would take a test despite possibly facing genetic discrimination just out of curiosity.

      • Richelle Neal says:

        I completely disagree with Victoria’s first few comments on this question. I think as a society we do emphasize our genetic information to describe and define who we are. It may not be the actual sequence of your genes, but we define our ancestry, our traditions, our looks, our ethnicity, and our personality traits to our genetic makeup. How many times have we heard our parents say something along these lines: “Oh you know her bluntness comes from your side of the family – you are British.” Or, “oh honey, you get your ears from the Italians on your dad’s side.” I do think we, as a society, have totally used our genetic make-up as a way to define who we are, and if genetic testing is permitted and becomes more universally accessible – it will continue to help us define you we are and who we will become. Lastly, I do agree with Victoria’s comment about getting portions of her genome mapped. I would do this to see if I carried genes that predisposed me to diseases I know my family members have fallen ill or died from, but I would also do it to an extent out of curiosity.

      • ecleveland says:

        I fall somewhere in between Richelle and Victoria’s comments on the current emphasis of genetic information in our society. I do not believe that genetics are currently a principle method of evaluating a person. I agree that we do define ourselves by some of the things Richelle listed-ethnicity, looks, ancestry, but I think that those evaluations are based on phenotypes, not genotypes. However, I think there is a very definite possibility that as we learn more about the human genome and relations between gene sequence and function, we may move more and more toward a society where genes are an important part of how we define ourselves. Because of that, I do not believe that widespread genome sequencing should be a standard of practice, particularly because of the possibility for discrimination.

    • Owen Jacobs says:

      I do not think that knowing my genetic profile as an important part of who I am. There is so much about me that has little to do with genes, as shown by the movie Gattaca, such as will power and stubbornness, as well as personality and humanity that make people more than just their genome. I would consider getting my genome mapped because of the possible medical benefits it could offer me.
      It is true that my generation seems to be uninterested in privacy. However, privacy will always be a right, but only the interpretation of privacy will change. As our generation matures, I think that we will outgrow much of our lack of privacy. The genetic information will be private to most people; however I think it will be shared between close friends just as personal information is.
      I hope that genetic information will never be used to discriminate because it is merely a probability, rather than a certainty. Gattaca would be an example of a man with “unhealthy genes” but he surpassed everyone’s expectations, including his genome’s. No, to me the health benefits outweigh the possibility of discrimination.

      • carrie litchman says:

        Our genetic code, indeed, is only part of who we are. In my opinion, this is one of my greatest concerns for the future of genetic technology. The vast majority of individuals are generally uninformed about genetics and its influence. I fear that this ignorance may create a negative situation out of something that could potentially lead to great improvements in humankind. Genetic mapping and research are beneficial for many reasons, but they require an informed audience in order to reach their full potential.
        The matchmaking company highlighted in this article makes me particularly uneasy. What, exactly, is a person’s “genetic match”? This seems dangerously close to discrimination. It could also cause great problems with genetic variability in the human race. Genetic information should be treated with caution.

    • Audrey Kocmond says:

      Why or why not?
      Your genetic makeup is what defines your capabilities however it does not define what you can do with what you are given. Your genes can determine your height however your height doesn’t always limit what you are capable of achieving. Yes it may be more difficult to play a sport such as basketball or volleyball but it is not completely impossible. Your genes may set limitations on what you can do however it is your will power and drive that ultimately determines what you can accomplish. Your genes define who you are, what you look like and certain traits of how you act but it does not define what you do with your life. There are a variety of people at different levels in society who all have different gene makeup’s, some even with very distinct traits that standout from others. It is through how difference and how we apply them that we are capable of being successful in different ways.
      I feel that everything happens for a reason and that what happens in nature is part of that cycle. I feel that it would be pointless if I got a portion of my genome mapped for it would eliminate the excitement and surprise of life. The little moments in life define who we are and what our futures are like. We learn from our mistakes and it is only through those mistakes that we become better people. By eliminating these minor imperfections we wouldn’t be able to continually learn from our experiences rather our lives would be incredibly boring. Imperfection is what makes life worth living for, it makes it new, exciting and unique.

      • Emily Scroggs says:

        I agree with Audrey’s comment about how genetic makeup does not define what you can do with what you are given. This, I believe, is a support for why genetic information should not be made easily accessible for employers, potential suitors, or anyone else on the web. Genetic make-up alone is not a fair determination of an individual’s personality, capabilities, and characteristics. I think it is a real danger that some may interpret the genomes of certain people extremely literally and not be able to look past these kind of facts when evaluating their character. Because of the trend towards superficial attitudes in the past years, I unfortunately do not have enough faith in our society to look past genetic make-up to see the “whole” person. Because of this, I think strict regulations need to be placed on the accessibility of each person’s genetic information.

    • Bryn Willson says:

      In response to question 3) Do you think genetic discrimination will be a significant problem as more and more people get genetic tests? Would you forego a genetic test for fear of genetic discrimination?

      I absolutely feel as though genetic discrimination will be a significant problem as time goes on because people will be intrigued by this incredibly new process in which they can learn more information about themselves. Therefore, more and more people will continue to have these tests run without realizing the potential ramifications.

      What worries me most about the people signing up for these genetic tests is whether or not they have given adequate informed consent. This is an issue because they may not realize how this information will be stored and who will have access to it in the future.

      Insurance companies, who have access to medical records already, will undoubtedly have access to this information as well. Access to these data will cause problems for those people who find out they have a disease they were unaware of, such as Huntington’s, or even that they have a predisposition to a certain disease. Unfortunately, insurance companies could use this as an excuse to deny coverage for fear that you may be more costly to them than someone who withheld from genetic testing. After all medical insurance companies are businesses and its better not to give them more reasons to deny people coverage.

      • Conor says:

        I agree with Bryn in that informed consent is one of the biggest issues that needs to be considered regarding the practice of sharing genetic information online. The participants probably are/were not aware of the possible implications that the technology might have for their present and future family members. This will become of particular concern if the information gets into the wrong hands (or the hands of those who could potentially use this information against you). Because this information does not just affect individuals, but also their future children and children’s children, the participants should be well informed and should probably seek council before getting involved. The states should even consider restricting participation to individuals over a certain age (like 18).

    • superlumin says:

      Hi, there. I have a MODEST PROPOSAL. Perhaps you shall consider it:

      Genetic mapping isn’t a new idea at all.

      What I mean is that people have been using science as a means of claiming correlation is causation.
      What I mean by this is that science is no better and no more inferior than any other societal manifestation of philosophy.

      In the context of this rhetorical response, I am defining philosophy as the human endevour to understand reality and its essence. Let’s not delve too deeply into concepts surrounding relativity, for now.

      If science is one manifestation of philosophy, so is religion. Society today is very much anti-religion, no offense to anyone intended. What is religion but a facet or concept similar to science. Indeed, we might even be able to say that science is the religion of modern society. I’d say both science and religion are, in their own way, human expression and search for greater knowledge, which is ultimately power.

      That being said, let us not return to the idea of genetic mapping. What is genetic mapping? More specifically, what is the essential goal underlying efforts in genetic mapping?

      Well, we’ve heard knowledge is power. What is genetic mapping but an attempt for us to know ourselves better?

      I am reluctant to say that we are seeing any quantum leaps of any sort, because that would imply a convergence toward Enlightement and full realization of Nature, Reality, God, the Universe, etc. For the sake of brevity and clarity and moderation, it is perhaps best to avoid saying anything further on the aforesaid. Basically, science is crude. Our knowledge of Nature is crude. That’s what techno-scientific research and innovation is for; we want to refine our philosphy and understandings of how things work.

      Science is, moreover, very presumptuous, if its authorities believe that a human being’s nature can be defined by concluding sets of random code — permutations of the letters A, T, C, G. This doesn’t logically make any sense whatsoever, does it? We don’t have enough data; we don’t have enough understanding to jump to the conclusion that Mary is born to be a shoemaker, when perhaps she’s the next Picasso. Just because Joe has an intelligence quotient of 200 doesn’t mean he’ll effect any significant impact on the future history of humankind. Intelligence quotient is in and of itself a falsehood.

      A friend reflected, “Math is discovered.” 2 + 2 equals 4. You can integrate incorrectly to incorrectly conclude the answer is 5. But forgetting the constant C still doesn’t disprove the sum. In the end, mathematics is pretty much all we’re certain of; physicists will argue how many functional dimensions there are, depending on what day it is. Theories of relativity will dismiss the idea of absolute velocity, because doing so makes our equations and understanding of Reality easier, simpler. Does that make our conclusion ultimately true? Does it make our understanding complete? Anyway, that’s just some food for thought. Math just is. What we extrapolate from it may or may not be true, however, and the degree of truth depends on the degree of extrapolation.

      Back to saying genetic mapping isn’t new, I’ll say eugenics used to be widely accepted as legitimate by scientists. It was studied and researched in the United States, not just in Nazi Germany. Sure you can measure the size of someone’s nose; but you can’t conclude Sally is a inherently evil from that quantity measured. Predestination is a concept that has been around for hundreds of years. Aristotle said some people were born to be slaves. Rosseau discussed some people are just meant to impose themselves on others; he said that power is unequally distributed among human beings in his non-award winning “Discourse on the Origins of Inequality.”

      Let’s not jump to conclusions, is what I’m saying. NUrture has a lot more to do with someone’s personality and fate, as opposed to Nature. The two are linked, but I don’t think it’s possible to ever say with 100% certainty that we can understand that exact link.

      That’s all, folks.

      -superlumin (Class of 2012, Engineering Physics & Computer Science)

      • blackjacket says:

        While I agree with you that nurture is not to be underestimated, we must give credit where credit is due. To compare current genetic science to late philosophical or classical social belief, is not necessarily fair. One has to remember that many of these “scientific” and “philosophical” beliefs were merely constructions of the social values that existed under certain religious sects. I understand that you define science as presumptuous, I also understand that philosophy is the quest to understand reality, but the two are completely different machines setting out to put parameters around a similar reality. But that does not make them one in the same. Philosophical postulates needed no data, empirical evidence, or support, all of which is synonymous with science. I understand that often times science operates on theory, but that too is rooted in some statistical probability.
        You may be right, in thirty years we may discover that our science was incorrect, or that our theories and statistics were flawed and lacking some crucial variable. But to discredit Nature, namely, the influence our genetic makeup has or even our interpretation of it thus far, is slightly naive. It is possible that I have too much faith in scientific achievements pertaining to genetic mapping. But the science of today is different than ever before, our medical advancements and technological power have expanded our savvy and knowledge base magnitudes above the pseudoscience and false science you have described. But if we always doubt our findings, knowing that in 20 years greater technological advancements may prove them wrong, then we would remain perpetually idle.
        All that being said, I agree that we cannot rely on genetic permutations to define someone’s nature. Let’s be honest, a gene that predisposes terrorism? Genes can only code for what exists in nature, physiological vulnerabilities,biological shortfalls, and natural dispositions to name only a few of countless. The hypothetical correlation that exists between a person with high blood pressure (potentially caused by a gene) and people with high blood pressure being more likely terrorists, is a social creation, not a genetic causation.

    • Lanesha says:

      I believe that individuals who complete these genetic tests are at risk of genetic discrimination. Currently, life insurance rates can raise to very expensive rates if an individual is inflicted with health problems. Now imagine if your genetic mapping was readily available. Employers could obtain this information and making hiring decisions based on such information. This genetic discrimination could potentially place large numbers of people in unemployment. The same is applicable to health insurance and carriers. I believe that with innovative science thee has to be modifications/adjustment to present policies in order to address both the intended and unintended consequences of such advancements in science/technology/ and medicine.

    • Dustyn Uchiyama says:

      I do not think that knowing genetic information is important for knowing who you are, though it could be useful in caring for your health and other things. If we all started planning out our lives and choosing careers based on our genetic data, life would become a program and mundane. The only possible portion of my genome that I would consider to be mapped is to discover if I am predisposed to diseases or anything detrimental to my health.

      The negative consequences of discovering your full genome outweigh the positives, in my opinion. In this day and age we have identity theft by exposing a first and last name and maybe a credit card number. Imagine what a full genome could do for such criminals.

      Perhaps this generation and those to come do not regard personal information with adequate security, and as a result genetic data could be as common as listing your favorite music on Facebook. I think the future generations and the ever evolving social norm could turn society into genome-discriminating and information hungry mundane individuals.

      Exposing genetic data would open the door for discrimination by everyone who has access to it. Employers may find someone not “fit” for their job or families may deem a man to be “genetically insufficient” for their daughter. I believe it is important to draft legislature before hand to control genetic data privacy before such advancements are made an everyday regularity. I do not think this issue is one where we “cross the bridge when we come to it”. The advancements in technology and genetic mapping would seemingly turn every individual into a science experiment of which the conclusion is already known. Life would then be a pre-determined program–one that is for others to discriminate against.

    • Jeff Langdon says:

      The first question : “Do I consider knowing my genetic code to be an important part to who I am.” As far as appearance, I would say so, but I don’t think who I am is defined really by what I look like, or dispositions to any genetic diseases. Instead, I am defined by who God says I am, because he created me in his image. That is, it’s not my DNA that where who I am lies, but rather my soul.
      The second question. I think web 2.0 is conditioning people to be less private with their information. For example, It will certainly be interesting when we see politicians of our generation’s facebook profiles when their opponents bring them up.
      As to the 3rd question, I can’t imagine why someone would include a genetic test in their hiring process if already they refuse to discriminate on the basis of religion, sexual preference, disability, etc. Companies know that it is in their best interest to discriminate based on performance, not on ‘potential’.

  2. Kyle Quackenbush says:

    I think that my genetic profile would be a good indication of things that I may be or are more inclined to become but that nothing is definite. If your fathers an alcoholic it is already known that you are predisposed to becoming an alcoholic. This does not mean that you will become one but it does mean that you should be careful and understand your risks. I feel the same way about genetics. It’s important to know them because they can help but you shouldn’t base your life in the fear or conformity of the information you would discover. I think that I would get my genome mapped but I would keep it extremely secret because I do not know what the future may hold for genetic discrimination.
    I think that the “web 2.0” generation will be more cautious when it come to sharing genetic information because the implications of the information could save certain people a lot of money. Greedy people and companies will do anything to acquire wealth and this includes denying people services because they could cost the company too much money. I hope that we will have strict laws in place to protect against genetic discrimination because I feel it is as wrong as racial discrimination.
    In response to Michio Kaku’s statements about genetic discrimination I would have to agree. For me personally I would never do such a thing but the world is very different than my personal views. Like I said earlier greed rules a capitalist society and if there is greed there will be genetic discrimination. I would definitely forego a genetic test for fear of genetic discrimination, not only to me but to a society in general. I believe it is better to live in a world without genetic testing if there is a chance that testing will inspire discrimination

    • Brian Norton says:

      I agree with some of what this previous post stated but I also would like to offer a differing opinion on some aspects. First off, although it is true that a lot of what genes tell us is not definite, there are certain things that can be definitely determined from a person’s genes. There are a number of diseases where it can be determined with full accuracy that a person will contract the disease just based off looking at their genome. This fact is something that must be kept in mind when considering a genetic test since this affects not only the person but also their relatives.

      I disagree with the statement that we should live in a world without genetic testing if it will lead to discrimination. I think discrimination is an unfortunate side effect of the development of genetic testing, but ultimately the decision to receive a genetic test has to be left with the person themselves. This follows the principle of autonomy which respects a person’s right to control his or her own life. The person that is choosing to have the genetic test done certainly should understand the risks and possible implications of a genetic test, but if proper informed consent is present we should not prohibit a person from making that choice.

  3. cfoster says:

    Aside from the discrimination element, I wonder what effect knowing your predisposition would have on developing one’s aspirations. Would it make you more likely to choose a field or a pursuit with which you were most genetically compatible? Or, would psychological barriers (knowing you were not a match for studying math for example) prevent people from being successful in fields that they would have otherwise been more passionate about.

    If you knew that you would only live until your early 30s, would that incentivize living a more risky life? Would it effect how society rationed healthcare? Why waste expensive treatments or preventive medicine on lost causes?

    Also, this whole issue reminds me of ancient theological and philosophical debates between predestination and free will. Maybe genetic testing will reveal that we are all just automatons.

    • nschwedhelm says:

      I agree with the first paragraph in the above post and can’t help but wonder if I too would make different choices in life if I knew my predisposition. Would people base they’re decisions solely on their personal genetic make up? Would the previous decisions people made in their life have been different had they known their genome? I really don’t know if I would rather be in the dark about my genetic make up and live the life I hope to have rather than have everything laid out on the table and make decisions based on the life I am destined to have. I think that having your own genome mapped should be a personal choice that individuals make for themselves. The whole concept on whether it is right or wrong to know your genetic make up to me isn’t the issue. In my eyes if we have the technology to learn more about ourselves and a person chooses to know then why not let them?

  4. Tommy says:

    I think my genes are a big part of who I am. They are the building blocks that I began my life with. I would want to know as much as about myself as my genes can tell me. But I would not say that they can ever define who I am. My identity comes from the choices that I make and the way I choose to live my life. Genetic mapping is a useful tool that may allow me to make better choices. You only get to live your life once and I want to live it the best i can.
    I don’t think that I would ever post my genetic code on Facebook. Here is all my family problems. I’m inclined to be violent and I’m going to die at an early age. It shouldn’t be that easy. But it is part of who I am. I don’t feel ashamed talking to my friends about past surgeries or medical problems in my family. Often its something that we share in common and not something that my friends would look down on me for. But as a population some people might be stupid enough to post their genetic code all over Facebook just like some people post their full name address phone number and schedule on Facebook. They don’t seem to understand that there is a risk or that THEY are at risk. Most people do. Most people don’t post their lives on Facebook.
    Today when you apply for a job your employer will ask you for your social security number. If DNA ever got to the point in society where it was deemed an accurate judge of the human person then I don’t see any reason why employers wouldn’t demand it as well. The question is will DNA ever reach that point? I don’t think so. The American people love to push their limits. Everyone loves the underdog, the man born with nothing that grows up to make millions or the man paralyzed from the neck down that paints amazing works of art. The American hero is defined by her accomplishments and the cards your dealt is less important than how you play the game.

  5. Sammy Riley says:

    Personally, I do not consider my genetic profile to be an important part of knowing who I am. I believe that most of our genes are either physically displayed (such as hair color, eye color, etc.) or they are shown through our personality. Even if parts of my genes are not shown physically or are not portrayed in my personality, I can look back into my family history and try to figure it out. For example, I know about most of the diseases I am susceptible through my family history. I would not get a genome map because I believe that it would change the way I live my life. I would probably find out things such as my life span, which would make me live either a more cautious life or a more risky life. However, things such as life spans can be dramatically changed if you happen to be in a car accident or some other accident that could lead to death.

    I think that they “web 2.0” generation will only be more cautious about handling genetic information if the government starts using it more prevalently. If it becomes as important as social security numbers then I do believe the “web 2.0” generation will be more cautious with their genetic information. However, if genetic information does not become an integral part of society, then I do not think people will not be careful about keeping their genetic information private.

    I would like to think that genetic discrimination will not occur, but if a company figures out that one of their top employees is suppose to die before 30, then what would stop the company from hiring someone with a longer life span that could work for the company longer. As of now, I do not believe that there is genetic discrimination, so I would not forgo a genetic test; however, once genetic discrimination becomes more common, I would like to forgo a genetic test in fear of being discriminated against. Although, if I do not comply and take a genetic test, the company might assume I am trying to hide a default in my genes. So it is a lose-lose situation.

  6. Claudette Linzey says:

    I think that my genes play a big role in what I’m capable of and therefore what I involve myself in, but I also think a lot of my abilities are trained. Sure, I may be athletic in nature, but if I don’t practice sports, then I won’t be good at them. I would not want portions of my genome mapped because I think it gets rid of imperfections, which are what makes us who we are. Without imperfections, everyone will be made to be alike. No one will excel in anything because there will be plenty more who are just as good. As a society, I think that people like to keep their genetic mapping private. People are quicker to judge if you come from a schizophrenic father, because you could have it too. If genetic information is not made private, then people will have to fill out job applications with all of their genetic problems, which would most likely result in genetic discrimination. Hopefully, the government is cautious of this and makes laws to prohibit this from happening. I don’t think I would forego a genetic test, because I have nothing in my genetic background that should make me less worthy than someone else. On the other hand, I’m sure that other would be judged for their genetic backgrounds, even certain characteristics are not prevalent in them but are prevalent in their parents. I hope to not be judged by my genetics. Although they are a large part of me, they are not everything.

    • Isabelle Nguyen says:

      At a basic level as Claudette mentions, genes do “make” a person. Genes code for proteins which catalyze reactions, act in metabolism, and in structural functions. Genes are only one facet and the other component is a person’s experience and environment. Genes to an extent measure biological constraints at a molecular level, not necessarily potential abilities.
      I also agree that a problem we may face is discrimination based on genetic information is unjust.Though the government has taken measures to say that discrimination is wrong, it hasn’t gone as far as legislation. DNA tracking and storing at the moment has no personal connection to most people. But if I get a genetic test the concern is what right do I have over it. How will the government then regulate these databases and will I have the right to take my genetic information out of the data base? Privacy is a huge concern.

  7. Madeline Gonyea says:

    We all have a different genetic profile, and yes, that is what ultimately defines our “make-up” but I don’t think it entirely defines us as individuals. Individuality is formed from personal choice and opinion—I believe knowing who we are is part of our belief system and lies in morality, culture, and the environment we live in. I personally would never get portions of my genome mapped out unless for health concerns. I am not against knowing genetic predispositions or testing, I realize it can help find cures and new treatments, and treat certain illnesses, but I believe the unknown is exciting and beautiful part of life. Genetic testing and profiling is becoming easily accessible, but one must consider the source—a lot of false advertisement and information is out on the web. I believe all information on the web needs to be checked and reviewed before one believes all information given. As a public we are gullible and naïve; we need to all take an effort in making the web a safer place. I would hope that this “2.0” generation would handle this data and personal information with care and concern, I personally don’t know of anyone who would want their genetic predispositions leaked all over cyber space. I think the comment in Kaku’s essay that follows the excerpt above is important—“Genetic information itself is not going to hurt the public. What could hurt the public is existing social structures, policies, and prejudices against which information can ricochet” (270). Everyday science is advancing, and this involves genetic profiling and testing. We need these improvements for cures and treatments—people have no right to judge others on their genetic make-up. If a genetic test were required for some reason, I would still take it. Everyday people are discriminated against for race, religion, gender preference, etc., and though I believe it is wrong to judge, I believe some in our society would discriminate against those with weird or “off” genetic make-up. “The answer is certainly not to slow down the advancing science, but to try, somehow, to make the social system more accommodating to the new knowledge.” (Kaku 270).

  8. Courtney says:

    I believe the human genome has a lot to do with an individuals’ personality and the traits they acquire, such as the way you think, your thought process, how well you obtain knowledge, or how good you are at a certain sport; but also as stated above, many things come from the environment you are submerged in. Not everything about a specific person can be mapped out by their genome. Although, I would more than gladly get my genome mapped to find out things about myself that I do not already know. It could help me determine what is best for my body and what I can do to continue to live a long, happy, and healthy life.

    I do not believe that “web 2.0″ will be able to keep genetic testing private. Although there will be laws against sharing personal information with others just like there are now, that will not be enough. Just as things leak out now, things will leak out then, no matter how hard people try to protect things. I do hope however that they would want to keep things much more private and would continue to try their best to protect the personal information of each individual.

    I agree with Kaku’s statement that if genetic testing becomes common, genetic discrimination will appear. Once genetic testing becomes a major priority, people will view each other differently based on their understanding of the human genome itself. As Kaku states that people these days are already denied insurance or jobs due to their physical deformities, there is no reason why they would not be subject to that with their genetic deformities as well. Again, I would forego a genetic test just to see what I am up against in my future and for my own personal curiosity, but I would not want others knowing what my genetic makeup is, just due to the fact that genetic discrimination is a possibility.

    • greenstripe0 says:

      1. The genetic profile in my opinion is an important factor. However, it isn’t the entire person. One cannot learn everything about a person simply by staring at there genes. This would be convenient but it doesn’t take into account quite a few other factors that can easily affect’s one’s attitude upon anything. One must take into account environment and the other incident’s in one’s life that led to the creation of their personality. True, it has genetic routes, but its the environment around them that truly helps to mold it.

      2. I would hope so. I really would. But, thats wishful thinking. This kind of information (much like all information) has an immensely high chance of leaking out to one’s family, friends, etc. I do believe that before this kind of genetic knowledge becomes widespread, more laws should be put in place to stop any sort of discrimination or possible loss of rights due to genetic information leaks.

      3. I do agree with Kaku upon the idea of a sort of genetic hierarchy. However, I do not believe that this is completely unavoidable. Laws can be put in place to stop discrimination or various other problems that could come about from the widespread use of these genetic tests. I wouldn’t do the gene test for because of the possibility of genetic discrimination, I would mainly do it out of my own curiosity. I would want to know what my genetic makeup is as I find that be an interesting topic. However, for obvious reasons, I would keep that information to myself.

  9. Paulina Perezalonso says:

    Personally, I don’t believe that genes completely determine who a person is. Yes, they do determine what we look like or other physical characteristics of ours, but they don’t completely determine who a person is. This topic relates greatly to the idea of nature vs. nurture which deals with the fact that genes don’t completely represent a person because there is also a dependence on how a person grows and matures into an adult including their life experiences and their personality. I don’t consider knowing my genetic profile to be an important part of knowing who I am for this reason. On the contrary, the only reason I would like to know my genetic profile would be to check for a certain disease in order to find a way to prevent it. But that disease does not determine who I am or who I am going to be or do. In addition, I do believe that the “web 2.0” should be handled with care and precaution because although genetic information is not very important right now, it will be in the future. People I’m sure would not like their private genetic information known to everyone, especially if their genetic information reveals diseases or other things considered to be a disability. People should be more precautious now instead of later with that sensitive information. For this reason, I also think that genetic discrimination will become a major issue in the future because insurance companies or jobs will discriminate against people that they believe will have a disease in the future or they are handicapped. I would consider foregoing a genetic test because I don’t believe that it what defines me as a person. Employers should not depend on a piece of paper that tells you what genes you have, but rather on the skills you can provide in a job. Genes are not the most important thing in defining who we are.

    • Anisha says:

      I do agree with Paulina when she said that genes do not completely determine who a person is. Though I think knowing your genetic profile could have its benefits, I do not believe it has a key role in knowing you are or what you’ll become. I believe that who you are is shaped from where you come from and the environment you were raised in, and that, in turn, shapes who you will evolve into as a person. Because I don’t believe my genetic profile would have any direct effect on the person that I am, I would consider getting portions of my genome mapped. I would want to find out if I had a disease or carrier traits. Even though I would not let it affect who I am as a person, I think that it could have an effect on my future plans. If I found out I was predisposed to a disease I think that it would make motivate me even more to accomplish the things I want to achieve. On the other hand I think it would also effect my decisions on my future family if I found out I was a carrier of a certain incurable disease.

  10. John says:

    Although the movie “Gattaca” seems farfetched to most people, I personally do not think that it is that far off from reality. There are some obvious references to racism and how minorities were treated in the earlier United States. Aside from that, however, we must look at the technology available today and how it is being used. We can now genetically map people, pinpoint genetic diseases, and predict the probability of one’s propensity to genetic predispositions. At the same time, while one might conclude that this is all the premise we need for genetic discrimination, we are also quite far from that as well. The main character from “Gattaca” quotes, “There is no gene for fate,” and this gets to the heart of the matter. There will never be a way to perfectly predict the success of a human being. That being said, there are certainly precautions to be aware of. Many employers are already discriminating against certain employees–or applicants–based on physical factors. Those factors could just as easily be genetic ones with the publication of human genomes. I am, of course, against that idea. If one were to request genetic mapping, though, all the better. Sure, ignorance is bliss, but do we really want to live in that bliss not knowing if this day will be our last? Simply put: genetic information should be private but available.

  11. Zoraida Aceves says:

    Your genetic profile is an important part of knowing who you are: physically. When wanting to know what color your eyes or hair is your genetic profile may be important nevertheless, emotionally and mentally it is a completely different story. When talking about knowing who we are on the inside the things that that actually matter are the experiences in life that we go through. Its obvious that our genes do not determine our personalities but rather by the interactions we have with people and the things we see. The genetic profile does not determine who a person truly is—we can’t know how a person will react to certain situations by just their genes therefore, they aren’t that important to anything emotional or mental. The genetic information would definitely be hard to keep secret for that long especially with the web being so public. Web 2.0 generation will not be able to keep it private especially with things like identity theft or people breaking into ours personal stuff happening. This would be yet another reason why genetic information would be so hard to control. Nobody wants their genetic information roaming around cyber space unprotected and even if there are things such as antivirus no one is willing to risk it. As genetic tests start expanding genetic discrimination will be a bigger problem. They will then know things that they probably wouldn’t have wanted to know before, i.e. life expectancy, future diagnosis. This will in turn affect how long they would be able to benefit a certain company/job; making it harder for them to even get a job. I would be extremely hesitant in taking one of these tests because of that reason. My people, I believe, would also be scared to take a genetic test in fear of ‘failing’ or ‘not passing’ what is said to be normal. In conclusion, genetic testing is not something that should be allowed due to its unnecessary discrimination.

  12. Victoria Vargas says:

    1. As of now, I do not see my genetic information as important because as a society we have not yet taken it upon ourselves to define ourselves through our genetic makeup. Therefore, I feel like my genetic information is of little importance when it comes to defining me. People do not see others based upon their genetic makeup and when they do in the future, then my feelings will change. Although i feel this way, I would consider getting parts of my genes mapped just out of curiosity.
    2. Based on some of the responses the people gave from web 2.0, I feel that they wont pay as much attention to keeping private people’s genetic information. Their argument of how we send tons of information through facebook and other networking engines supports their argument. As of now there is not real threat. It’s not like someone will steal your genetic information and ruin your credit score It doesn’t work that way. Because we all have distinct information, it is very unlikely for someone to use your information against you to hurt you.
    3. Yes, in the future genetic discrimination might become an issue as more and more people use genetic information. Your personal information might reveal your flaws, which in my perspective shouldn’t really matter because its not the genes who define a person, but what aspires the person to be who they are. I think I would take a test despite possibly facing genetic discrimination just out of curiosit

    • Sara Grevera says:

      Your genetic makeup is no indication of the person you are or your personality. Sometimes, humans can be easily influenced so past experiences, your surroundings, and the people around you will make up who you are and who you are can often change overtime. Some parts of your genome are worth getting mapped out, such as diseases we might have later in life. If we knew what diseases we would have, we would take more preventive measures. But I do think things like life expectancy should not be mapped out because we would change because of it. If one had a short life expectancy, one might take every precaution to be careful and soon it might take over their whole life to be careful. If one had a long life expectancy, one might take more dangerous risks, which might also shorten one’s life. Knowing our genes, would change us as humans.

      Web 2.0 will not be able to keep everyone’s genome private in the future. I’m sure there will be stricter laws protecting people, but those won’t work all the time. The laws against sharing files over the internet don’t work now because there are millions of songs and movies downloaded illegally everyday and the government cannot control it. Just like people post pictures, write about themselves and put personal information such as their last name and where they live on the internet, I think our genome will just become another one of those things that can easily spread over the internet. When this happens, family members run the risk of possibly finding out what potential diseases they have, when they might not want to know about in the first place. Anything posted on the internet will never be private no matter how much security is placed upon it.

      As genetic testing becomes more popular in the future, genetic discrimination will defiantly occur. In the movie Gattaca, whenever a human is born, the baby is immediately genetically tested for any diseases and life expectancy is determined. Vincent had a heart condition that would have never let him get into the space program, Gattaca. Genetic testing is not 100% and the possibly for getting the disease may not even exist. So, if someone had a high risk of a certain disease, they have a higher chance of getting denied from jobs and insurance when they may never get the disease in their life in the first place. This will produce unfair discrimination because when it comes to jobs, a person’s skills and experience should be looked at, not their genes.

  13. Allison Kamiya says:

    Genetic profiles are not an indication of “who” a person is. A person’s character cannot be determined by the sequence of proteins that makes up his DNA. I doubt that genetic profiling will ever play a significant role in screening potential employees (like in “Gattaca”), only because I believe that gene sequencing, if ever made mandatory, would be an entirely medical issue, and therefore fall under “doctor/patient” confidentiality. If gene sequencing is ever beneficial to discovering my susceptibility to certain diseases, then of course I would. It would be a kind of “pre-prevention” program. But there’s always the issue of privacy concerning medical issues. Since, at its core, genetic sequencing is a medical issue, I feel that the “web 2.0″ generation will be more private concerning this issue. But if this falls into the “everyday” category, I have no idea how private our generation will be. Genetic discrimination may pose a problem in the workforce in the future, especially when health care comes into the arena. It is definitely an issue that needs to be heavily regulated and overseen by the government. If a universal health care system is put into place, though, it seems as if it would pose less of a problem, espcially if genetic profiles are kept confidential, even from the government.

  14. Sean Grey says:

    1. In my opinion, I would like to resist knowing my genetic profile. Though I do believe that it is a good idea in preventing many diseases or seeing your body’s potential, making it easier for a person to maximize their abilities to the fullest extent. I would not consider getting my genome mapped because we are not defined to society throughout genome, at least not yet.

    2. I think the “web 2.0” generation will not be as private as they say and conceal this important information. The reason for why I believe that is because with an iphone, one can connect to the nearest internet connection, whether private or public, and that connection can now be viewed, so in reality your information stored on your phone is now being revealed to a person with that amount of power to view these types of things.

    3. I do believe that genetic discrimination will be a significant problem as more and more people get genetic tests. As time goes on, more people will be informed of the possibilities of knowing your own genetics and it might create problems for that person because he/she is then capable of knowing flaws in their body as well as diseases that could arrive in the future, maybe even fatal. I think I would to get a genetic test but only in the right circumstances, that it would be 100% private.

  15. nancy martinez says:

    1. Do you consider knowing your genetic profile to be an important part of knowing who you are (or who you’ll be)? Would you consider getting portions of your genome mapped? Why or why not?
    I do believe that knowing ones genetic profile is important because it give a person an insight into the workings of their body which will lead to the prevention of hereditary diseases. This way a person who has the knowledge of their body is bound to take better care of themselves. It is human nature to have self preservation so they wish to know as much as they can of their body’s inner workings. I actually would consider getting a portion of my genome mapped because this was when I procreate I will know whether it would be a risk to have children of my own or if it would be better to adopt children instead. I know that diseases exist that are dormant within one’s self and that those traits are passed down through our children, so I would like to know if I have a disease this way I can prevent from further spreading a bad trait. I can see why some would think that having your genome mapped would be a negative idea but in all due reason there is no proper reason why a simple mapping would be bad other than if it were to get in the hands of others , but that is why there exists laws that protect the basic human rights, like the right to privacy.

    2. How do you think the “web 2.0” generation will handle the issue of genetic information and privacy? Will they be more cautious when it comes to genetic information than they are about other information?
    Although the “web 2.0” generation is advancing quite rapidly I believe that because of the many distraction on the internet the “web 2.0” generation will be very uncaring when it come to the issue of genetic information and privacy. They are more likely to post it on myspace and facebook than keep it to themselves. Apart from the many networks that exist to keep people “connected” , because there exist so many new advancements on the internet there are bound to be people who will be able to go around the system and hack others. I wish to believe that they will be more cautious when it come to genetic information but in reality there has been no change in pattern regarding their privacy in the last few years, so I do not believe a change will come any time soon, maybe not even during the time genetic information is accessible.

    3. Michio Kaku wrote in his essay, “Second Thoughts: The Genetics of A Brave New World“: “Since time immemorial, societies have committed some form of genetic discrimination. People with obvious deformities or diseases were taunted, labeled witches (as in Huntington’s disease), systematically isolated from society…What is new, however, is that today it will be possible to screen individuals for a genetic disease even if the disease never appears. Someone who may never suffer from a particular genetic disease may be denied insurance or a job if the person has a high probability of developing a genetic disease.” Do you think genetic discrimination will be a significant problem as more and more people get genetic tests? Would you forego a genetic test for fear of genetic discrimination?
    Although I am all for genetic mapping because it will provide a genetic preview of any diseases a person might develop I do believe that if used incorrectly, as foreseen in the excerpt, there will be significant problems in regards to discrimination. Discrimination continues to exist though it is not talked about much, should genetic mapping used to screen human being then there will exist a problem as more and more people get genetic testing. Personally I would forgo genetic testing in fear of discrimination because race and gender are one thing but getting discrimination on a genetic level it would be like insulting ones whole history because in ones blood is your ancestry. So yes I would forgo a genetic screening if it meant being left alone without the eye of society judging you.

  16. T Mondkar says:

    Genetics has pervaded our society in varied forms: mapping, structure, engineering, cloning, selection etc. However, genetics poses several questions whether it is legal or simply ethical to map an individual’s genome and make assumptions upon the individual based on the sequence of the genome. The mapping of the genome has been stretched to lengths that has surpassed the basic identification of potential links to medical conditions and become an identity representing each person before they have the chance to express themselves. Nowadays, genetic mapping has transformed into tools that enhance relationship websites, background search, and medical mysteries. Certainly, the genetic profile would be helpful as a scientific instrument in deciphering our ancestry, present struggles, and possibly, encounters with problems: yet, personally, I do not entirely believe that the genetic profile is a sole means of determining who we are and who we will be. Many people in the world have been diagnosed with medical disabilities, both mental and physical, and have overcome them; bipolar disorder, autism, and paraplegia etc. If we were to be solely prejudged by our genome sequence, then we would be already be predestined and positioned in a certain rank, void of mobility. There is a great flexibility and mobility of the social ladder amongst all individuals despite their conditions, and therefore, providing equality among everyone. So, I would not consider getting my genes mapped (or portions) due to the lingering possibility of future bias against the void between presentation of myself and the picture created by my genes. The web “2.0″ generation will handle the issue of genetic information and privacy as the social issues have been treated. Initially, they will not realize the massive impact it holds upon their social and professional lives until they become victims of harassment from an unknown person. They will not be cautious until the moment arrives when they realize the potential danger captured in their personal information that can be made available to people familiar and unfamiliar to them. As more and more people get genetic tests, genetic discrimination will be a given: in today’s day, insurance companies lean toward offering protection to seemingly healthy individuals. I would forego genetic tests for fear of genetic discrimination because I do not want to be mandated to a position for the rest of my life without having the ability to move up or down. Thus, genetic mapping and tests should be conducted with the consent of people and companies should be tightly monitored in order to protect the public from invasion of privacy.

  17. Richard Fong says:

    If I were to define myself, my genetic profile would be one of the last things I would use to represent me. There are so many more aspects of myself that have more relevance on who I am and what I do than my genes. Genetic information only provides an outline of a person’s body, it allows us to predict certain things about our bodies but it really does not define who anyone is as a person beyond their physicality. That being said, I would consider getting portions of my genome mapped to find out if I have any predispositions to diseases so that I might be able to take action to reduce my risk of developing them, provided that my information would be kept private.

    The “Web 2.0” generation is notorious for oversharing information, but I do not think that the emergence of genetic information will result in Web 2.0 users being significantly more exploited than anyone else. Most people who use social networking sites, write blogs, and otherwise post information about themselves online are smart enough to avoid share sensitive material like their addresses and financial information. There is potential for those who do post material they may regret sharing to be further damaged, but I think for the most part genetic information will make matters worse only for those who already share too much of their information.

    As more and more people get genetic tests I think genetic discrimination has a greater potential to occur but would be overshadowed by discrimination in other areas. The vast majority of professions do not require superior bodies and employers should be smart enough to care more about what a person actually accomplishes on the job than what their genetic information suggests might or might not happen to their body. I think the subject that is much more of concern for discrimination is age. An employer would probably be more concerned about an applicant who is older than one who has a less perfect genetic profile because there is a very proven correlation between age and health problems. Given this, I would only forego a genetic test if the rest of society came to believe that our genes were the only thing that really mattered in defining ourselves.

    Overall I think genetic information is overrated in the wrong ways. It is not what we have that matters but what we do with it. A person who has many skills that they do not apply is less productive than someone who has fewer skills but effectively makes use of them. Even if our genes prove to be accurate in predicting our behavior, genetic knowledge would only serve to affirm that the aspects that make us unique individuals correlate with our genes. The true danger of genetic profiling will only be realized if there is also genetic engineering and enhancement of human beings, and even then, genetic information would only be a tool used for discrimination, not the actual source of it.

  18. Melissa says:

    1. Do you consider knowing your genetic profile to be an important part of knowing who you are (or who you’ll be)? Would you consider getting portions of your genome mapped? Why or why not?

    I don’t believe that my genetic profile is an important part of knowing who I am. Life experiences are what shape me into becoming the person I am today. Not my genetic profile. Although it might be useful to know what possible diseases I may be at risk for, I would not consider getting portions of my genome mapped. Not only because I rather live my life the way it is meant to be, whether that involves health problems or not, but also because I do not know the direct and indirect consequences of getting my genome mapped. It may seem like a good idea today, but in the long run, who knows what consequences it may bring.

    2. How do you think the “web 2.0” generation will handle the issue of genetic information and privacy? Will they be more cautious when it comes to genetic information than they are about other information?

    I think that at first the “web 2.0″ generation will not handle the issue of genetic information seriously. Privacy may not be a huge deal in the beginning, but once we continue to develop new ways of handling and using our genetic profiles, then the “web 2.0″ generation would have to take privacy seriously as well as the issue of genetic information. I think that after a couple of bad incidents that occur due to a public display of genetic information, the “web 2.0 generation” will take more caution in displaying their own genetic profile.

    3. Michio Kaku wrote in his essay, “Second Thoughts: The Genetics of A Brave New World“: “Since time immemorial, societies have committed some form of genetic discrimination. People with obvious deformities or diseases were taunted, labeled witches (as in Huntington’s disease), systematically isolated from society…What is new, however, is that today it will be possible to screen individuals for a genetic disease even if the disease never appears. Someone who may never suffer from a particular genetic disease may be denied insurance or a job if the person has a high probability of developing a genetic disease.” Do you think genetic discrimination will be a significant problem as more and more people get genetic tests? Would you forego a genetic test for fear of genetic discrimination?

    I think that genetic discrimination will be a significant problem as more and more people get genetic tests. Having a Genetic Information Non-Discrimination Act helps prove the point that there is already a genetic discrimination feeling rising and therefore this act must be established. I personally would forgo a genetic test for fear of genetic discrimination.

  19. Dominic Rios says:

    I feel the most troubling aspects of this post are the affordability and proliferation in which this genetic information exists today. While I personally do not agree that genetic importance will play the “Gattica” role in our society, these two aspects make the issue attention worthy. The fact that the cost of these tests is down, and the availability is increased leads us to believe that that these tests are occurring. I think the fact that people are increasingly interested in these matters says something about the society we are becoming. Have we really come to the point where we need to know absolutely everything? Furthermore, have we lost control over our lives? We are increasingly relying more and more on machines for direct answers and instant gratification. We want our cell-phones uploaded with the latest news or music, we want our computers to update us with the latest updates and media alerts. The same is true of this testing. We want computers and technology to dictate to us how we should lead our lives based on what our genome says. We do this without remembering that 1) these tests are open to flaws (as anything programmed by humans is) and that 2) just because something is in our genetics does not mean it will necessarily affect our way of life. We simply stand down and accept the fate that these genetic tests simply because the results are stamped with “scientific” approval. I feel that the proliferation of this technology only increases our desire for instant gratification and we should use this technology sparingly.

  20. Aaron Lynch says:

    Having my genetic profile mapped is not something I have considered. I do not think that knowing your genetic profile is an essential part to knowing who you are. I would consider having a sequence of my genomes mapped if it were in my best medical interests (i.e. to screen for any high risk of susceptibility to a fatal disease). I would consult a doctor, rather than submit my spit and a check, if I were to have my genome mapped. I would not make my genetic profile publically available because it may have unforeseeable consequences for my family and me. I do believe that many people will allow their genetic profiles to be publically accessible, for a variety of reasons. Many people will unknowingly have their genetic profiles exposed, because of the lack of regulation in this sector. Genetic discrimination will not have a role in society until many more genomes are mapped. I would consider avoiding a test until I find reason to have my genome sequenced.

  21. william truong says:

    1. I would consider knowing my genetic profile because I would be able to prevent any diseases or disorders that I may currently have or develop. However, I would rather avoid knowing my genetic profile because I do not want people to base my capabilities off of my genes. I am more than just a bunch of numbers and letters printed on paper, and

    2. Initially, I believe that the Web 2.0 generation will attempt to control and regulate issues of genetic profiling. However, because genetic profile comprises of such a wide-scale of opportunities, it is extremely difficult to regulate. Hackers would eventually be able to access the many available genetic profiles of individuals, causing a loss of privacy. Because our genes are permanent and unchangeable like our social security numbers, it will be fatal if our genetic profiles are stolen. However, Web 2.0 will eventually become more cautious about genetic profiles as privacies are violated and people begin protesting about the dangers of this practice.

    3. I do believe that genetic discrimination will be a huge problem as more and more people get tested. It is in human nature to choose the best and most suitable things for themselves. As a result, hiring will become a process heavily reliant on an individuals genetic history and genetic favorability. Individual’s with advantageous genes would be selected first from the crowd despite their horrendous work habits. Many hardworking individuals would be overlooked if they possess some unfavorable genes such as diseases or a tendency for forgetfulness. As a result, I would forego genetic profiling in fear of genetic discrimination. Nonetheless, genetic profiling will expand to the point where it will be a requirement to be tested before an individual may be hired.

  22. Leonard says:

    (1) I am a very logical person. I like math and science, and I am in constant search for the right answer for everything. The idea of having my genetic profile, however, does intrigue me much because it takes away the most amusing part of my life: the process of searching for and solving the unknown. Like everyone else, sometimes I feel very stressed and helpless about my future. Surely genetic profile test would be a great relief in the time of uncertainty, but so is the religion. The more fundamental issue here is “does being genetically superior in a certain field simply mean I would also enjoy working in that field?” Probably not. Based on my experience, people struggle finding where their passion lies and what they would enjoy doing for the rest of their lives, rather than what their genes are better capable of doing.

    (2) In theory, “web 2.0” generation would get a serious education on privacy and ethics and there would be strict regulations on accessing individual genetic profiles. Yet, I doubt these actions could simply solve the problem in reality. We cannot guarantee that nobody would misuse other’s genetic profiles; Internet is a space far more complex and unpredictable than one can image, and its mechanism is evolving day by day as the technology changes., This would not be an ultimate solution, but at least we can try our best to improve the current online security system and start from there.

    (3) Genetic discrimination would be almost inevitable once the test becomes popular and more people get an access to the information. I would probably forego a test not simply for fear, but because I do not believe that human dignity should be simplified and codified in mere scientific terms. What worries me further, however, is that as the number of participants increases, even the people who forego a test would be treated as a minority and become another victim of the discrimination. Rather than being respected as a matter of personal choice, even foregoing would be understood as a sign of deficiency and inferiority.

  23. noojoh says:

    1:
    Having a genetic profile would be useful in some aspects but would in a way over prepare me for my life and set certain restrictions on what I do. I would worry about the traits that are wrong in my genes and also the test would provide me with excuses for not being my best. For example, I could simply say that I wasn’t genetically programmed to do certain things. Also, it may in the future cause a society which is not far from the one showcased in Gattaca and there is no doubt that the technology will evolve into something that may make humans too perfect. Also, like in the movie, people will not excel and reach for further goals than what is set by their genetic constraints. Knowing too much can definitely be a bad thing when it comes to genes.

    2:
    It’s hard to imagine with all the information that floats around and gets stolen everyday that genetic information will be kept safe. The web 2.0 generation is a vastly different one than the ones even from months before as the web constantly evolves. Once again, like it was done in Gattaca, genetic information may be used to discriminate and also restrict the lives of this generation. Technology may actually hinder society rather than help it grow and unite. I may be totally wrong however and the web may not use genetic information in malicious ways but it is definitely a possibility.

    3:
    Genetic discrimination will occur if genetic information becomes as easy to find as one’s ethnicity. Tests will make people feel either superior to others or worthless in some ways. I wouldn’t take a test in fear of my inadequate genes, but then would probably be seen as a minority by not taking the test. Not taking the test will almost mean the same thing as having unwanted genes; therefore, I will probably be forced to take it eventually.

  24. Kendra Postell says:

    Genes do play a factor in who you are or who you will become, but one should not ignore the huge effect the environment has on personality career and even future medical disorders. When considering gene study and mapping, one should note that while genes may predict your chance of having a medical condition or personality trait, they could never predict such things with 100% accuracy. Genes and environment interact with one another and are both important factors in making us who we are. Personally, I would get my genes mapped, so I can be prepared for the future medically. I would rather know about diseases I am likely to face in my future and be prepared then be caught totally off guard. For example, if I were told that I had a 75% chance of being diagnosed with cancer, I would be able to save money for my treatment and have tons of time to find the right doctor rather than figuring all of those things out at the last minute while dealing emotionally with the bad news.
    I do not feel that our generation has a problem with information sharing. The article and videos gave no good proof to support their point that this generation has an issue with “over sharing” and all of the people I know are responsible about what they post online and who they allow to see it. Through sites like myspace and facebook, we have had much practice in safely sharing our information and I think we have found a reasonable balance between what we have the ability to post online and what we actually post. We will treat our genetic information with the same caution we treat our pictures, blogs and other personal information.
    I believe that with proper education now, genetic discrimination will not be an issue in the future. Scientists who come out with the new studies and technology have a responsibility to teach the public how to use the new information responsibly. They should be sure to emphasize the fact that genes do not define people, they are one of the many factors that make us who we are and having a genetic predisposition to certain things does not necessarily mean that it will appear. For example, it is possible for a person who has alcoholic ancestors to be a responsible drinker and for someone who has a breast cancer gene to never develop the disease. If educated properly, I believe people will realize that refusing to hire or vote for someone who has a predisposition to deadly disease is an ignorant waste because the candidate still has a chance of leading a healthy and long life. If used properly, genetic testing can actually help people with diseases rather than hindering them and I believe the medical benefits outweigh the social risks. For example, if one has a high chance of developing heart disease, as shown by their genes, they will be able to make lifestyle changes such as healthy diet and exercise to completely prevent the onset of the disease. If someone gave me the opportunity to know what medical conditions I was predisposed to, I would take it so I could use preventative measures against these diseases. If however, an employer asked me for a DNA sample to use as a basis for hiring I would refuse because genetics are not a good indicator of how someone will perform a job. If the proper measures are taken however, I do not believe that genetic discrimination will ever become an issue.

  25. Brett says:

    -1-
    Knowing your genetic background is only a small part of who you actually are. The environment and way you are brought up is the the key to what you will make out of your life. When looking at identical twins, we often see that they are very different from each other personality-wise (although there are some who are very similar). It all depends on the environment and the “nurture” of one more than the “nature”. The only reason i would have my genome mapped would be to look for genetic diseases. Even so, would someone want to know that they have a high chance of a fatal disease? The life would be restrained by fear of if it will happen. Therefore, I would not consider getting my genome mapped.

    -2-
    The web 2.0 generation cares very little for privacy as we can see more and more on facebook and other social websites. I feel that there will be more caution for their genetic information, however, they will still be open sharing it as time goes on and trends change. Just a simple game on facebook involving genes could get your genome out onto the internet and into the hands of everyone with a computer. It is a matter of time until it happens to everyone.

    -3-
    If there comes a day where genetic tests are part of any application process, it will be too late to decide if it is ethical or not. All the information will be out by then. I would be confident in my genetic background but i would be happier to know that my character is judged based on my actions and achievements rather than my DNA sequencing

  26. Zune Nguyen says:

    Genes are certainly a part of who we are. However, they are not definitions of who we are or who we will be. Even though genes influence our behaviors, stating that specific DNA sequence causes certain behaviors is too extreme. I would consider having portions of my genome mapped, simply because I am curious. However, I would not consider that map as a predictive tool for my future.

    People, especially teenagers, already have privacy issues with social networking. They tend to share too much information that potentially, can put them in danger. I expect the “web 2.0” generation to have similar issues, but with appropriate education and warnings, people might be more cautious. Knowing the spectrum of possible outcomes that sharing genetic information can cause, people will think twice before publishing or allowing other companies to publish their genetic information.

    Even today, with all the laws and ethical issues, discrimination in many forms is still present. One day, genetic discrimination will certainly be an issue. People who are genetically predisposed to certain diseases might have a tougher time getting health insurance. However, I believe that we all have learned from the history, and will not allow genes to set standards and define social classes.

  27. John Michael Hansen says:

    People have the right to privacy. It comes with being a US citizen. Part of privacy is having the choice to hide what you dont want others to know, and the other part of privacy is making known to other people what you want them to known. As a basic right people should be allowed to share thier genetic profile, especially if they want to contribute to medical trials that will save lives in the future. However the madatory disclosure of genes is a blatant disregard to ones privacy. The idea of mandatory gene disclosure is worse than that of the goverment wrongfully reading e-mails, or tapping civilian phones. However because our personal facts are something that we should have complete power over, it only seems right that people have the ability to put online, and acess their genetic makeup. It always comes down to personal choice. And if optional genetic profiling and documentation allows people to truely own and understand their indentity that it would be immoral to keep it from them.

  28. John Michael Hansen says:

    People have the right to privacy. It comes with being a US citizen. Part of privacy is having the choice to hide what you don’t want others to know, and the other part of privacy is making known to other people what you want them to known. As a basic right people should be allowed to share their genetic profile, especially if they want to contribute to medical trials that will save lives in the future. However the mandatory disclosure of genes is a blatant disregard to ones privacy. The idea of mandatory gene disclosure is worse than that of the government wrongfully reading e-mails, or tapping civilian phones. However because our personal facts are something that we should have complete power over, it only seems right that people have the ability to put online, and access their genetic makeup. It always comes down to personal choice. And if optional genetic profiling and documentation allows people to truly own and understand their identity that it would be immoral to keep it from them.

  29. Grace says:

    An individual’s genetic profile certainly plays a role in determining who one is or will be; however, it is only marginal in regards to the role that the environment has on an individual. Genetic profile is like judging people based on their appearances, which society has concluded is not accurate or right. Judging people on the basis of their genetic profile is invalid because personality is what differentiates one from the other. Like in Gattaca, the central character succeeds despite his physical limitations because his personality and character had the drive to excel. I would definitely consider getting my genomes mapped in the event when our society runs on genetic information. It would be foolish to remain ignorant to change even though I do not entirely believe that our genes should be tested at all, except for health-related reasons.
    The Internet has handled our private information pretty well with the creation of PayPal and other websites with enhanced security; however, privacy in regards to our financial assets, which is the main concern on the Internet these days, is much different than privacy regarding our health. Our credit card numbers can be altered and our accounts can be reimbursed, but once our health information is out, there is no way to change it or get that information back. As a result, this could affect our jobs, relationships, and other positions in society, and simply hinder our future. People can attempt to be cautious but the reality is that information, especially our health information, will eventually leak. Insurance companies, firms we may eventually work for, and the government may/will want our health information to determine whether we are worth looking after and if we are, how much we have to pay to sustain a relationship with these officials.
    Genetic discrimination undoubtedly will be a significant problem if genetic testing becomes more prominent in society. But, in some sense, it is almost logical in terms of the economic and political perspective of society. It is more efficient to hire able workers than ones with significant health problems, or potential problems. With genetic testing, firms can view peoples’ genomes and see whether they are predisposed to health problems that will be costly and time-consuming. Although, these claims are certainly unethical, the government and other officials have an incredible amount of power in the public eye. I cannot readily say whether I would forego a genetic test to avoid genetic discrimination because it would ultimately depend on the situation.

    • Rodney Nishimoto says:

      The Genetic Information Nondiscrimination Act (GINA) protects you against employment and health insurance discrimination, but NOT against life insurance, disability insurance and long-term care insurance discrimination. Americans afflicted with genetic illnesses rely on disability and long-term care insurance to maintain their dignity as disease withers their health. As more people get genetic tests, the incentive for insurance companies to use genetic tests results to screen applicants will increase. Human persons have an inherent dignity that requires people to be treated with respect—we ought not to deprive persons with genetic illnesses from insurance that will reduce their suffering in the future.

  30. Alissa Chan says:

    I consider knowing my genetic profile to be an important part of knowing who I am. Eventually in my life, I will discover who I am, but not my genes. I need science to get information concerning my genetic profile. With this genetic profile information, I will know know what I can do to prevent injury or illness in the future. However, this also questions whether one lets fate decide. By getting my genome mapped, I am not only committing to the idea of a thriving science world where everyone knows each others genes but also a world in which science is dominate and controls my life. Nevertheless, I do consider getting a portion of my genome mapped out because I want to prevent any future health or genetic issues and also learn about myself by searching my genetic traits. A genome would also help me learn more about myself.

    With popularity with the internet, anyone can access any information out on the web. I think the idea of a “web 2.0” generation will prohibit the idea of privacy. In this case, I feel that government should place strict laws on viewing a genetic profile. If there is too much leeway on looking at these genetic profiles, it could leave to a massive identity theft problem. However, regulating the internet is hard enough now. There are way too many hackers, viruses, and worms to worry about. I believe that making genetic profiles online would add to more internet problems. People should take extreme caution when posting genetic information online to prevent identity theft or something quite worse in the near future. Nevertheless, there are some benefits of having genetic profiles online such as finding a long lost sibling or helping some predict a future health issue. It could provide readers with the opportunity to learn more about genetic information.

    Discrimination is inevitable in the world today. I believe that genetic discrimination will happen across the world if we do genetic testing. Those who wouldn’t get a genetic test would be discriminated against because they didn’t try this scientific process. Others who do in fact get a genetic test and are diagnosed with a genetic problem will be labeled. Genetic testing would create a perfect world. It is similar to the world of Gattaca where because of Jerome’s genetic problems he was unable to work in the upper class. I believe if we proceed with genetic testing and corrections it will be the same. Humans with weaker genes will no longer be able to apply for high paid and upper-class jobs. The idea of hard work, perseverance, and other individualistic traits will no longer be important in the near future. I wouldn’t forego a genetic test in fear of genetic discrimination. Although I wouldn’t want to be discriminated for a job because of my weak genes, I feel that my genes shouldn’t predict who I am. I must take it upon myself to do my future. My actions will dictate who I am. If I do have weak genes, I hope that my ideas of hard work and perseverance would help show others that I can do something despite my weakened genes.

  31. Andrew W. says:

    1. Genetic makeup does not amount to a person’s character. Genes only make up a person’s biology but not what kind of person they are or will be. Genes are in a way like tools or materials to work with. For example, if a person were given a set of tools and building materials, there is no single product that can only be produced. One could build a bridge, a sky-scraper, a statue etc., just as a person with a given set of genes can potentially become anyone. Another key example is the case of identical twins. Genetically, they are identical but their personalities can be polar opposites. People should be defined and judged according to their merits and accomplishments. Personally, I probably would get my genome mapped, for practical health reasons not for self discovery. Even though I still do not know exactly who I am or what I will become, a genome test would not make any difference to my character.

    2. I think that the web 2.0 generation will experience some problems regarding their genetic information, as this generation has already experienced fraud and identity theft with other personal information. There will always be criminals in society who steal from others. The internet is basically an open archive of information, secure but not impossible to breach. Internet identity theft already exists, and a person’s genetic information would just be another thing to steal.

    3. Well there already is some genetic discrimination when selecting people for an occupation, but it is based around more logical reasons. For example in the US Marine Corps they reject those that they determine to be physically unfit for the physical demands of being a soldier. The Airforce also has the right to reject applicants who have poor eyesight. More genetic tests could present a more significant problem of discrimination. A person’s genome could potentially replace a person’s resume, just as it did in the film Gattaca. People’s credentials and merits could be rendered obsolete. If society turned into one that judged people solely on genetics I would have to forego a genetic test in order to apply for jobs and whatnot. Hopefully that is not the future of human society.

  32. marinahoward13 says:

    Although knowing your genetic profile would definitely help you better understand what you should be, nothing it says is set in stone. Even if there is a high probability you will develop a fatal heart disease, there is also a chance that you won’t and that you will fight through the odds to succeed. This is why I believe it is important that you don’t get your genome mapped. If you do, it will define who you are, and you will be far less likely to achieve anything that you have a low probability of achieving, because you will know it’s not likely to occur. However, if you don’t know your genome, you can dream big and maybe become someone or something you genome map didn’t think was possible.

    Also, there is the issue of privacy. My generation, nicknamed the “web 2.0” generation in this article, unfortunately doesn’t seem to pay much attention to what they put on the web. Facebook profiles, even if they have privacy settings, can be seen by future employers and yet people still put up pictures of themselves partaking in inappropriate or illegal actions. We are quick to trust the internet, even though everything you search or type in it can potentially be seen by hackers or other people. This is why, unfortunately, I don’t believe my generation will be more cautious when it comes to sharing genetic information online. This may come back to haunt us in the future, as insurance companies get a hold of our genome information and could use it to determine whether or not to offer us insurance based on the probability that we will develop a disease or medical condition.

    I agree with Kaku that, even before the genetic discrimination we face today and in the near future developed, a form of it has been present for a long time. Even if we didn’t know what peoples’ genetic information was, throughout history we have discriminated based on mutated appearance, deformity, and disease, all of which are genetic issues. However, this new form of discrimination will be even more effective, as people will be discriminated not for what they have at the moment, but for what has a high probability of developing in them in the future.

  33. Eugene Trilesnik says:

    I think that knowing your genetic profile is not important for knowing who you are. Since genes are heditary, thus you do not know what the person would get. I personally would never think about getting genome mapping. I do not like the idea of finding something out that I will not want to find out. Genetic discrimination will be a significant problem as more people get genetic testing, because in Gattaca they did interviews through genetic testing and if the world is not careful the same thing could happen in our life. If genetic testing was the way to get a job, I of course would get it because I would want to support my family.

  34. Aakash Agarwal says:

    I believe it is quite important to know who I am/will be…Finding out if I am more susceptible to cancer or some other disease early on would greatly change my life and the way I live it. This article does raise many good points about genome mapping. If I get my genome mapped, its results could propagate throughout my family. This is something that would be unpleasant for newborns [as somewhat seen in Gattaca] I think I would get my genome mapped just so I would know…I would not share the information with others though. Genome mapping does pose very many issues as stated in this article, and I believe before it goes wide scale, there will be much debate.

    The web 2.0 generation will jump on the idea that the genome can be sequenced and put into the palm of our hands. Such wide spread of the genome would lead to privacy breaches and much discrimination. Again, as seen in Gattaca, the ones with the preferable genes were chosen to go to space…the ones who did not have the right genes were subject to jobs such as janitor. The iPhone app already sounds like something right out of Gattaca. I do not believe our society is ready for such a change in how we [will eventually come to] view others- based on genome rather than for the individual him/herself.

    Genetic discrimination will definitely be a huge problem. I think it would pass racism and be an even much larger problem. I would forgo a genetic test, but the the results were not favorable I would not share them. We don’t know what is in our genome until we see it…this makes me think that it is something we should not look into because looking into genomes, the code of life, people would begin to alter it [like in Gattaca] and breed only perfect individuals. While this does sound good, the ethical and moral questions arise. I believe abortion would be a huge problem. I believe fetus chromosomes can be analyzed to check for abnormalities, so a form of genetic discrimination is already happening.

  35. Charles Hall says:

    I do not believe that knowing who I am is dependent on genetic testing. I’ve been alive for eighteen years long enough to come to grips with my personal identity. For the sake of curiosity I would be interested in getting my genome mapped to better understand my family genealogy. My main interest in genetic testing would be to use it as a tool to help with my personal health. I believe it would be a shame to not utilize genetic mapping and later have health issues which could have been recognized early. If tested I would want my genetic information to remain strictly confidential as to not put my self at the mercy of the insurance companies.
    In general I believe that society does not like to punish people for disadvantages they were born with. Thus I believe that law makes will be pressured strongly to pass legislation that would restrict the distribution of personal genetic data. Regardless of what is best for protecting the individuals rights there is going to be pressure for personal genetic data to be used with the intent of helping the greater good. For example if a person is tested but chooses to ignore the data that says he or she is predisposed to a preventable dieses should it be the responsibility of the insurance company to pay for the treatment even though it could have been avoided by the patient. Exactly where the balance will lay I don’t know however, I do think its safe to say that regardless of what the final role genetic in society is, the subject is going to be debated widely allowing for the legislation to be well though out.
    I don’t believe that genetic discrimination will be relevant in the future because of how modern society does not like to discriminate people based of what they are born with. The fact that society in general does not like to discriminate does not mean that companies, individuals or, even the government are not going to try to. It is going to be the responsibility of lawmakers to prevent individual’s personal information and rights from being infringed on.

  36. Ryan Cashen says:

    I feel that I do not need to know my genetic profile to know who I am. My personality would be the same after knowing my genomes. I feel this could influence health and science factors but not change the way I run my life. Knowing who you are is based upon how one conducts themselves and I would not choose to get my genome mapped unless it provided life saving information. I am fine knowing what I do about myself now.

    In this coming era we must work harder to secure the internet. We cannot let everyone’s private information appear across the web. They should work harder protect genetic information because everyone has a different biological make-up. People who hack information on the internet must be prosecuted and stopped. The government must begin pushing for harder legislation on these areas.

    I do not think genetic profiling should be used in the future job process. This would be discriminating towards people who have problems with genetics who cannot help there disadvantage. We do not need to incorporate this in our job systems.

  37. Kelly Mckenna says:

    1. Do you consider knowing your genetic profile to be an important part of knowing who you are (or who you’ll be)? Would you consider getting portions of your genome mapped? Why or why not?

    I definitely consider my genetic profile to be an important part of who i am. With my family’s history of genetic disease, i have had to be tested, along with my family, to see if we carry the disease. However, i would not want to have my whole genome tested. I feel as though if i were to so this, i would most likely live more cautiously and not ever “live”. i don’t think it is a good idea for everyone to know everything about them down to the genes. Also i feel as though this mapping could lead to discrimination in getting jobs and it would be a privacy issue.

    2. How do you think the “web 2.0” generation will handle the issue of genetic information and privacy? Will they be more cautious when it comes to genetic information than they are about other information?
    I think that they will need to be very careful with how the information is kept. ALready now with sharing music and public information online people do illegal things. If there was information as valuable as peoples genomes online think of what people would do to get them. There would need to be many more regulations if they were to have information like that accessible.

    3. Michio Kaku wrote in his essay, “Second Thoughts: The Genetics of A Brave New World“: “Since time immemorial, societies have committed some form of genetic discrimination. People with obvious deformities or diseases were taunted, labeled witches (as in Huntington’s disease), systematically isolated from society…What is new, however, is that today it will be possible to screen individuals for a genetic disease even if the disease never appears. Someone who may never suffer from a particular genetic disease may be denied insurance or a job if the person has a high probability of developing a genetic disease.” Do you think genetic discrimination will be a significant problem as more and more people get genetic tests? Would you forego a genetic test for fear of genetic discrimination?

    I definitely think that genetic discrimination will be more prominent in a society where there are genetic tests. just like in the movie gattaca, people will be judged based on what they are inside but not what they can actually do. People who are carriers for a disease will most likely not get jobs as readily as other individuals who are not carriers even if the carriers to not posses any of the bad traits. I do not think genetic profiling is a good idea to use for jobs and other things like that.

  38. Nicole Guzman says:

    I do not consider knowing my genetic profile to be an important part of knowing who I am/who I will be to be. Personally, I feel like part of the excitement in living is not knowing what lies ahead. But getting portions of my genome mapped would be something I would consider if it could help cure me of preventable hereditary diseases. This genome mapping is such a huge step for the scientific and medical world, but I do feel like a lot more research should be done before anybody actually considers doing it. What are the privacy risks? Confidentiality?

    As previously expressed, my concern for privacy and the sharing of personal information is definitely present. In today’s world – the “web 2.0″ generation – files and data are thrown around on the internet with little care for where it goes. If and when genetic information becomes an issue for us, people are going to have to be a lot more cautious. However, I do not think that this will be possible. People don’t know how to protect themselves from hackers and internet frauds. This is why I feel that genetic information should be available quite yet.

    Yes, I do think genetic discrimination will be a significant problem as more and more people get genetic tests. That is just the way our society works. Unfortunately, we always find a way to create a social hierarchy.

  39. steph says:

    I believe that knowing your genetic makeup could be a great asset in a medical sense. Knowing my personal genome might be interesting; however I would only take it at face value. Knowledge of the human genome should only be used to understand physical aspects, but not define who we are and what we will become. We are all very different and complex people and despite what science may tell us, I believe that we are driven by our beliefs—which are formed through our experiences and the way we are brought up. Individuals who live genuinely and discover true passions and aspirations can develop their human spirit, and from their identity.
    The movie Gattaca does an excellent job of expressing some very valid concerns that could potentially come into play in the near future regarding the scientific advancements and research that is currently going on today. I think the movie takes these issues a step further and challenges science by asking what will become of this newly found information. After watching the film it made me wonder about other concerns that might come from the idea of genetic profiling. Is it possible, that if put into the wrong hands, genetic engineering could become a type of systematic brainwashing for ultimate control?
    Issues surrounding genetic discrimination are also legitimate concerns and may become a big part of our world in the future. It is important to discuss and learn about all aspects surrounding how much information we should obtain about ourselves. Knowledge is important, however ignorance is bliss!

  40. Isha Mehta says:

    1. I think that right now genetic testing on myself would not be necessary. Unless it had some medical benefit, like the prediction of disease in my life, finding out my genes would not change anything in my life. Unlike the movie Gattaca, society today is not as dependent on genetic testing so I think it would be pointless for myself to be “mapped out”.
    2. Yes, I believe the next generation will slowly disrespect and have no consideration of privacy in terms of one’s genes. Laws can be formed to try and prevent online exploitation but that can never stop everyone.
    3. Yes, I do think that genetic discrimination will appear as the more amount of people have their genetic profile compiled. When corporations see different diseases in an applicant, even though they might not be able to see them, they have the right to consider the inability of this person to perform well. This type of prejudice is wrong, but the more and more people who have this test done, the more it will become prevalent in society and employers will want to make it mandatory to submit. I would willingly give a test, but only in the situation that it was mandatory.

  41. MJWballer09 says:

    1. I believe that a persona genetic make up is vital and extremely important however i do not feel that it makes up the entire individual. There is so much more to a person than just their genes. Genes are extremely important because they can lead to future health issues and future problems. People knowing your genetic make up also are able to tell things about you just from knowing your genes. However that could be a very small part of you. Your genes are also very important because they can give one the opportunity to come to know ones own history. It is important to know your own specific genes because it is important to know your own ancestral history and where you came from. Knowing this is important to understand your full self and who you are completely. I would consider getting my genetic traits mapped because i am very curious about myself. I would like to know as much about myself as possible that way I have a full understanding of myself and not just using my views and feelings. I have a physical view point of myself as well. I believe that is extremely important.

  42. Alex Ambrose says:

    1. I think that discovering aspects of one’s genetic profile is something that could be very revealing. It would help them know what they should prepare for, what they should be wary of, and what they don’t have to worry about. However, at the same time, it is like asking the question: “Would you want to know exactly where, when, and how you were going to die?” If you answer yes, then you lose a lot of risk from your life because you feel like you don’t have to worry about self-preservation, because it’s “not your time.” However, there is always that date looming over you which you cannot avoid, no matter how you try. This is the same with knowing your own genetic profile: there are things that you won’t have to worry about, but there are things that will bother you for the rest of your life which you would have not known about previously.

    2. Personally, I would be extremely careful with my genetic information, more careful than things such as my social security number (if that’s even possible at this point). Since the possibility of genetic profiling is very real, I don’t think I would give out my genetic information to anyone, even if it lost me a job. Once you give it out, it’s out there, and you can never get it back.

    3. I think that where there are humans, there will be discrimination. As such, when we find more specific ways to discriminate, I think that we will take the opportunity, no matter how ethical it may or may not be. I think I would personally forgo a genetic test, simply because I wouldn’t want to open myself to that type of discrimination. Also, I don’t want to worry myself with things that may not actually come to pass.

  43. Maya Hough says:

    I think that genetic discrimination is definitely a looming problem in the future. In the future, perhaps more people will begin to pay for genetic tests, which will undoubtedly lead to genetic discrimination, because it is inevitable: people can’t help wanting to know whether an employee is going to be best for the job, etc.
    I would probably forego a genetic test to avoid genetic discrimination, but I would be curious to have a test done; I might have one done on my own secretly. I think technology is interesting so I would pursue gaining knowledge. However, I wouldn’t want it to be used against me.
    One thing that is interesting to note is that one’s genes can hardly explain who a person is. This is shown in the movie Gattaca, where the main character is perfect for the job (going to another planet), in every aspect except for his genes. He has potential to die at a young age, but he doesn’t. Although genetic problems might be spotted, but personality or ability cannot be determined from your genome. This is proved by identical twins: they have the same genes, but are very different people. The only similarity is the looks. This returns us to Octavia Butler’s series Lilith’s Brood, specifically the second book. The humans are very sight-oriented: they determine the “alienness” of a hybrid by its looks, as opposed to their genes or personality. Being similar in genes and/or looks doesn’t necessarily prove a similarity in personality. Even though twins are identical in looks, their personalities can be very different—even with almost identical upbringings in the same environment. This stresses my point of how important experience is as a factor for influencing personality characteristics. What truly influences and shapes a person is their life.

  44. Roberto says:

    I believe that genes do not define who you are, so I do not care what my genes say about me. Those who think that genes define who they are live in fear, and justify all their misfortunes by blaming their genes. If you think genes define you, you will start to feel inferior. That is why I choose to believe human’s wonderful gifts of will power and imagination. If you can visualize yourself doing whatever you want and work hard to make that vision true, that vision will become true. That’s what is so wonderful of our creative imagination. If you beleive that genes define you, and for example your genes say that you have a gene that makes you an introvert and will always be shy and you believe it, than youll always be an introvert and will miss out on opportunities. But if in the other hand you can see yourself breaking that shyness and being outgoing, and you act upon your imagination, then you will be outgoing. Gene research sounds incredible and fun, but I will not let them define me.
    The internet is not the place to have personal information posted. Time and time it is seen how celebrities lives are destroyed to to private videos or photos that are leaked into the web, and anyone can see them. If your gene map is posted online it has a great chance of being stolen from wherever you posted it, and people all over the world will be able to see them. If it is true that our future world may turn into a world that is run by genes, your genes will affect your life and your family’s lives in the long run.
    I think genetic discrimination will be a significant problem. I think that certain stereotypes will be proven “true” by genes and our society’s discrimination on race, gender, and other variables will become “facts” about the particular people. And facts are hard to be overriden, so this genetic discrimination can make our world become just like our world during pre-WWII when Hitler thought the anglo-saxon race were the best. Genetic discrimination may lead to an upperclass that can’t ever be challenged because they are “perfect”.

  45. Veronica Koo says:

    1. Currently, knowing my genetic profile is not an important aspect to knowing who I am and who I will be. Although I know that my genes make up part of me, it only contributes to my physical attributes. I have my own unique traits that can not be discovered by looking at my genetic profile. I would only consider getting portions of my genome mapped if I needed to find out if I will have any serious or deadly illnesses, this way I can find a way to either prevent it from happening or try to delay it.

    2. In my opinion, “web 2.0” generation will not be able to handle the issue of genetic information and privacy. This is because the internet has become so public that many people are vulnerable to identity theft, and having one’s genetic profile on the internet can be very risky.

    3. Over time as genetic tests become more popular, I do believe that genetic discrimination will be a problem. Daniel Ballon states that if the government were to check everyone’s genetic profile, they would figure out the people who have the same genes as a potential terrorist and tap their phone lines and keep them under surveillance, although this is wrong. But because the government tries to be proactive and safe, they would go to extreme lengths to ensure safety for all. Also, I feel as though people will be judged by their genetic profile, whether it says that they will die at an early age or a certain trait they obtained. People will treat others differently, either in a negative or positive way. This relates to the movie Gattaca, however I do not think genetic discrimination will go to the point where one with an average genetic profile will not get a job.

  46. Katie says:

    Everyone seems to be really worried about genetic information getting abused because it will be all over the Internet. It is oversimplifying the problem to propose that we shouldn’t put genome sequences on the Internet?

    There are certain organizations (the secret service, maybe FBI come to mind) whose jobs entail secrecy. Why couldn’t the government set up agencies for gene testing that would be held to those same standards of privacy? Then it would become an individual choice whether or not to share your genome with the whole world.

    • Ankita Kohli says:

      I partially agree with Katie. If we get around the issue of putting the genomic information on the internet then it could be good because people would not have worry about somebody gaining illegal access to their personal information. But, in today’s world the internet is the best way to allow sharing of information among many people, in this case scientists who want access to the different genomes for research purposes. Of course people can gain illegal access to information even if it is not on the internet, but I think the internet does make it easier. I don’t think we need agencies as secretive as the FBI but a well monitored agency would be good. This would allow the government to keep a better check on who has access to the genetic information of a person. Maybe there could be a system where you have to request somebody’s genetic information and that person is notified and can give consent or decline when the request is made.

      • Conor says:

        I see what both of you are saying–that we shouldn’t oppose the idea entirely out of fear of the information being stolen or somehow getting into the wrong hands, but I also think you are missing the point. One of the major arguments mentioned above is that we simply don’t understand what all of this genetic information means now or could mean in the future. Because of this, no one can be fully informed as to what posting their genetic information could entail for themselves or future generations. Consequently, it would be wiser for people to refrain from submitting samples to these companies at least until we as a society have a better understanding of the genetics and know what we’re getting ourselves into.

    • Kyle says:

      I can understand the idea that “security” may be generated by establishing a government controlled database to contain our genetic information; however, such a database is still bound to an ethical complication of access.

      Organizations such as the FBI, NSA, CIA, etc. do have a great deal of security; yet, even these organizations erroneously disseminate, lose, or leak data. If even the “best” kept secrets are, at times, lost by these government agencies, we have no assurance that our genetic information will be kept completely private. Hence, can we truly trust something as personal and as definitive as our genetic information to a government database?

      In addition, even if such a database had the strongest security in the world, the people who have legitimate access to the data may be motivated by financial gains, or other reasons, and may ultimately unrightfully access and distribute highly personal information. Therefore, our information may still be accessible by the administrators and other government personnel. And yet again, even a government organization lacks the impermeable security of which you suggest.

      Henceforth, I must side with Conor. It would be valuable to keep genetic information on record, and in a database, but if such is the case, we cannot expect complete security. So, in conclusion, I suggest an alternative way to store data–perhaps with randomly assigned numerical values (such as a Swiss Bank). Ultimately, this issue appears to be more complex than we may initially believe.

    • Alexandria Shearer says:

      I have an issue with the “[setting] up [a government agency] for gene testing.” Are you suggesting that the government should be the chief authority for holding genetic information?

      I think that it’s too easy to put our faith in government to handle the genomes of our citizens, even if it is sworn by standards of secrecy. You are probably inclined to suggest this to protect those who maybe lack good-enough judgment to keep potentially incriminating evidence about themselves private, which is understandable and benevolent of you. But I think that if someone is not wary of the means in which they share and purchase services for mapping their genome, then they must face the consequences. All of society should not have to pay by handing over their genetic privacy to the government for those few who are not careful with some of the most personal information one has.

      The government is infamous for finding loopholes that infringe upon the privacy of its citizens in the name of protecting national security or some other equally altruistic purpose. For example, the Patriot Act, in which the privacy of US citizens was disregarded to screen for at-home terrorist threats. I am not suggesting that the Patriot Act was necessarily bad, rather that historically the government has shown a propensity to abuse its administrative power as such.

      We talk about issues of genetic privacy in terms of law enforcement and justice. I feel inclined to yell out in this comment field that the government should absolutely under no circumstances hold a database with the genomes of its citizens to ensure our right to privacy, but that may be impractical of me. So I will compromise with myself to say that only people who have proven by their actions (not their genome) that they are a threat to society have relinquished their right to genetic privacy (as well as those who relinquish it either by entrusting their genome with private companies who do little to protect their privacy or by posting it on the web). DNA may be seized to solve cases in which there was a serious offense, and the genome of the criminal should only be considered in executing preventative measures against their crimes in my idealized universe . . .

  47. Melissa says:

    1. I don’t believe that a persons DNA determines who they are or who they will become. Mapping out my genes is not a priority for me at the moment. The only reason I would consider having this done would be for a medical benefit. I believe who we are is determined majorily by nurture over nature. This process seems unneccessary.

    2.Identity theft would be more likely to occur. The government could try and regulate it but people would find ways to go around the laws. Some laws are not taken as seriously and people would develop ways to get peoples genetic information. Even now only a small portion of people take an extra effort to protect their information so there is no reason to believe that the common person will know how to take the extra security precautions.

    3. Genetic discrimation is possible and likely to occur. People would be discriminated because of what their genes say. People would assume that people have certain faults that would prevent them from being able to perform certain tasks.

  48. Peter D. Tran says:

    I believe there are several problems with this type of genetic testing. All of these methods, despite what they claim, are not 100 percent full proof. As of right now, the scientific limitations of these tests are to great, people need to understand this, and not rely on these tests as some sort of life sentence. The next problem, as many have pointed out, is the possibility of genetic privacy being violated. Health insurance companies, employers, and society may end up discriminating against those with a negative propensity towards a disease. Although there are now laws enacted (Genetic Nondiscrimination Act), it would be difficult to protect these rights, and even more difficult to hold these companies accountable. Finally, the people who end up with negative results need genetic counseling in order for their genetic information to be maximized. These personal tests can cause hasty and uninformed reactions and need to be monitored very closely. With many of these tests going mainstream, none of these options will be end up being pursued.

    • Christine Le says:

      I agree with Peter’s point on the difficulty of holding companies accountable under the Genetic Nondiscrimination Act. You can throw as much legislation out there to protect these privacy rights but it will be hard to implement it without someone standing over their shoulders. And with insurance companies, there is always the choice of doing the right thing versus doing the thing that is more financially promising for the company.

  49. Elizabeth says:

    With the development of any new technology, the benefits that are received from the technology are to be weighed against the risks that it involves. In the case of genetic testing, there is a very significant concern about being able to protect oneself from being discriminated against based on your genetic information. The thing that worries me the most is that the human track record does not exactly support the idea that when there is a profit to be had, or losses to be avoided, an individual’s privacy is the first priority. It is exactly the opposite. If companies – for the purposes of insurance or as employers – have access to genetic information about an individual, and there is nothing stopping them from denying coverage or letting people go based on that information, then ultimately they are going to do it. Ethically it may not be sound, but as businesses it makes total sense. The two points that really resound with me are that even if you make the personal decision not to have your genome mapped, if enough people get theirs mapped, then it is not going to be too difficult to extrapolate what yours is at the very least going to resemble. So, thus, other people’s decisions are affecting your ability to stay by your decisions – and your autonomy is being violated. The second point that really struck me was that once the information is out – it’s out. There is no going back. Because you can’t replace your genetic information that release of information is permanent. That is something that future generations (including our generation) need to be very wary of. Before the usage of information that is garnered from genetic testing is better regulated and the consequences of releasing your genetic testing results are fully realized, I believe that one should withhold from genetic testing unless there is a clearly apparent, pressing reason to do so. For instance, if you have a family history of a certain disorder, or you know that you are likely to develop a certain disease because of other risk factors, then it is a wise decision even considering the risks. However, if you are having the tests through a proper physician, the results should remain private (at least within your family). I can’t justify sending my DNA to a company to have my genome mapped just out of curiosity. As I said, any genetic testing and any release of the results needs to be approached with caution and is something that I will be talking to my children about, right after the birds and the bees conversation.

    • Fran says:

      I agree with you Elizabeth on all the arguments you make against genetic screening when there is no dire medical need. However, I tend to play devils advocate in my head. Though I agree that privacy is a huge concern and that there is no “going back” once you get the screening, I do not feel like one’s autonomy is inherently violated as you argue. I think that being able to make the choice to get tested or to not get tested upholds our autonomy in itself. You say that autonomy is violated because other people’s decisions are affecting your ability to stay by your decision… but I feel that is simply true throughout all aspects in society. By living in a fast paced society like we do, we are constantly affected by the people around us because we depend so much on other people so we can maintain the lifestyle we have. The way I see it, we still have our autonomy in whether we get tested, how we get tested, by whom we tested, etc.
      That being said, I am also still very weary of the potential discrimination that genetic testing could lead to. We already have enough things so apparent in our life which make it easy for people to judge, discriminate, and categorize us, is it really necessary to add one more thing to that list?

    • Danny Walinsky says:

      Elizabeth- I agree with every argument you made. I would only consider being tested if I was completely sure I would be the only one with access to the results.

      The idea that Health Insurance companies could exploit an individual’s genetic data has been brought up multiple times in this thread, but it could be only the tip of the iceberg when considering the drawbacks of posting genetic profiles online (or otherwise making them public). Genetic research has only just begun, and at this point it is difficult to tell how much scientists of the future will be able to know just by looking at your genes. What if ten years from now people looking at your genetic profile could know what your subconscious fears and desires are? Or what color that ugly birthmark on your thigh is? Or how many times a week you masturbate? Would you still post your genetic information online?

      With all this information at their disposal, corporations will find a way to benefit, and likely compromise the privacy of individuals in the process. Sure, they could customize a deodorant to work with our individual pheromones and make each of us smell irresistible, but they could also take advantage of our personality traits and turn us into mindless consumers. Already, internet ads are tailored to the viewer, basing their content off previous sites visited and/or personal information that has been submitted previously. Add genetic data into the picture, and these ads will be entirely personalized, and difficult to resist even if the product is something the individual does not need.

      The benefits and problems of genetic testing are impossible to predict at this point, and when approaching this subject we should do so with utmost care.

  50. geoff klein says:

    1. The idea that we have to know our genetic makeup in order to know who we are seems to be a weak effort to promote the use of these new technologies and a way to market the sale of these services. Is it strictly our genes that make us who we are? Although they play a huge part in our physical appearance as well as predispositions, we must keep in mind that it is our life experience that shapes who we become as humans, as well as the environment we are brought up in. There is no doubt that there is a beneficial piece to technologies that inform us as to what our genetic predispositions are that can be used to diagnose diseases early or possibly keep an eye out for them in order to give a person a better chance of survival, but what is really important is the discussion of where this technology stops. For centuries, we have not had this information and humans have carried on, carving out their own niches, striving toward their dreams no matter what their genetic predispositions. How would society change if people’s live choices and paths were influenced by the genes they know they have or don’t have. The digital age of instant information and gratification is upon us, and the abuse of this technology is a very easy and logical step to make if there are not very specific and well written restrictions put on them. Also, it is easy to see that in many cases new programs and technologies are being developed before they can be evaluated ethically. Knowing that these ethical discussions are taking place is a relief but its important to remember that what we can do and what we should do are very often different things. The use of gene mapping techniques for sound medical procedures and prevention and the potential for saving lives is very exciting, but using the newest technologies just so people can know what they are made up of if they want to opens up a whole new pandora’s box of issues, social, economic, and ethical.

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