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. Sblock says:

    To get your genome sequenced does not necessarily allow a person to determine how their life will be lived, but it will give them the impression that their behavior and life is set in stone. Genetic sequencing seems beneficial for medical purposes, but because there is so little know about the entire genome it is simply silly to think that determining a predisposition to a getting a disease is enough to start sequencing genomes. Is our society not already discriminatory? Judging someone by the color of their skin will shift to judging someone by the sequence of their genome. Who can argue with the sequence of a genome if it is universally understood that it contributes to the way a person is? Our genome is not the only thing that defines us but society might grow to solely believe in the genome and not the influence of environment. The great mystery of human beings is our ability to have emotional strength and will power, something that (as we know of) cannot be mapped in our genome. In the end we are only human, and to expose the pieces of ourselves to be judged and used in future ways that we are unaware of is not a smart or ethical decision. The best comparison that comes to mind is of the Industrial Revolution. It started with some innovative and interesting ideas to create better and efficient ways to improve America’s industries. Now our planet is in danger from an excess of carbon emissions due to factories and other innovative technologies that were meant to advance the ways of living. The underlying message can be applied to genetic sequencing. Can we not learn from history?

  2. Tina Iguchi says:

    I don’t believe that knowing your genetic profile is an important part of knowing who you are, or even deciding your future. You will be who you work to be or you could be what your environment produces. People will do all kinds of unpredictable things. Their genetic disposition cannot influence the billions of choices they will make throughout their lives.
    Now, I would suggest that it is unwise to get portions of your genome mapped, unless through the confidentiality of a licensed doctor. This is the only way to protect your rights of privacy. While it may be beneficial to oneself to learn more about their genetic influences, it will do them no good to bring these influences to public attention. There are countless reasons to keep your personal information personal. A persons genome is as important as their identity. For this, it is imperative that this information is secure to the person which it belongs to.

  3. Haley Banbury says:

    Personally, I don’t consider knowing your genetic profile to be an important part of knowing who you are; I do, however, feel it will have the ability to sway the direction of who you will become. Being that environment is an important factor in determining the fate, both medically and otherwise, of an individual, the environment coupled with the genetic profile seems to have a much more powerful effect together versus when each are considered separately. I would not want to get any part of my genome mapped becuase, mainly, I don’t want the burden of knowing what I might be predisposed to. It is almost like the mind teaser question: “Would you rather know the exact date of your death without the year, or the year of your death without the date?” I feel like if I knew I was predisposed to Alzheimer’s, it would constantly weigh on my mind, possibly making me mistake every little detail I forget as its onset.

    As for the Web 2.0 generation, it is hard to say whether they will be careful with their genetic information. I know I would be, for fear of genetic discrimination in job searches and insurance plans — insurance is already heard enough to come by and if you let the insurance companies know of any potential health issues you might have, it will be near impossible. However, that might change depending on if Congress passes a the health reform bill, which is a different topic all together. I think if the Web 2.0 generation is thoroughly educated in the possible misfortunes of parading genetic information around, or until it comes back to bite us, a larger number will be more cautious with that information than we seem to be with other personal information.

  4. Maissam Noori says:

    Like any new area of science and technology, the genetic testing is opening up more doors and opportunities that have potential to be useful and advantages in our lives. These genetic tests also raise a lot of privacy and ethical issues that at times can be intimidating. For example, can insurance companies require us to do genetic tests before signing us up to protect their bottom-lines? As we are watching the mess in our banking system that has taken over the news in the past couple of years, one can come away with the conclusion that banking is corrupt and unethical. Nonetheless, economists explain the problems with our banking system were caused mainly with our government lifting useful rules and regulations that were essential for this system to run efficiently and ethically. Same argument can be used in genetic testing. Yes it is tempting to look at the vast implications of these tests on our privacy and decide that we are better off without them. But instead the right approach is to identify issues related to privacy, safety, and etc. in genetic testing and create public policies and strict regulations that protect consumers and at the sometime allow this new area of our technology to flourish. I have two concerns with the genetic testing. I’m concerned that we as a society might put more emphasis on genetic and overlook the environmental and social factors in addressing our problems. Can we label a person as ‘damaged good” by looking only at their genes and therefore neglect other factors such as upbringing and education? My other issue with privacy in genetic testing has to do with the limited applications that information obtained from genetic testing has on our day-to-day lives. If one finds my social security number or credit card number, then that person can do much more damage than if one finds my gene sequences. The usefulness of our genetic information for an average person needs to be taken into account when we as society are creating our public policy toward genetic testing.

  5. Caitlin Hawley 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?

    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 response to question 2, I must take a stand for my generation. I concede we do tend to over-share when it comes to personal information such as “relationship status” or current events. However, you would be hard-pressed to find someone’s credit card number or social security posted on an social networking site. When it comes down to it, we understand the meaning of privacy (proven by Facebook’s new addition to their privacy settings). There is no doubting we are more open than previous generations but we also have more personal information at our fingertips. My parents knew more about me at birth than their parents knew about them at two. I also feel that as a twin I have a very unique perspective on genetic information and is a semi-comment on question 1. Although we are fraternal, Shannon and I indubitably have that “twin” quality. There are times when I know what she is thinking and even when we are far apart I feel her near. Is this a genetic phenomenon or a unique and special relationship that rarely develops? In my opinion it is the latter because I know twins that do not have the bond I share with my sister. There are a myriad of other factors besides my genetic code that have made me the person I am today. I am not merely my genetic code but a product of my environment and the love with which I was raised.

  6. Kate Rawlings says:

    A lot of interesting issues were brought up in the blog; the one that most intrigued me was the struggle between transparency and progress and privacy. It is undeniable that mapping genomes is tremendous progress in understanding the intricacies of the human body and the way it functions and malfunctions. Mass genome mapping could lead to groundbreaking research into certain disease predispositions or even causes. However, as pointed out, these positives cannot be seen as the only side of the argument. Privacy is obviously something that is extremely important and should be protected. We closely guard all other individual medical information, so why should the genome be something we are allowed to expose for the good of society? I thought the issues discussed concerning civil liberties were especially relevant. Yes, fighting crime and cutting down on false convictions would be much easier with a database of every citizen’s genome. But would a society who knew the most intimate details of every citizen and could therefore track its movements be able to be called a free society? It seems that might be crossing into the worlds written about in Brave New World or 1984.

    I do agree with the above comments that our simple genetic code does not predetermine everything about us as people. Environment and experience play a crucial factor in the expression of our genome as well. However, the mere fact that we are more than our genome does not lessen the possible risks associated with mass, public genome mapping. The ethical and legal issues involved with the information provided by the ability to map the genome will be something our generation, and generations to come, will have to confront and resolve. The very existence of a blog such as this does allow one to hope that we can make the right decisions concerning these issues, though.

  7. LTracy says:

    My main concern is with consumers not understanding the meaning of genetic test results. As the first video mentions, genetic sequencing businesses, may manipulate consumers with false advertising and mistaken promises. The majority of consumers, are unfamiliar or uneducated about the basics of genetics and distinction between predisposition and diagnosis. Furthermore, because this field is both new and uncharted, new discoveries will only break the surface of the complexity between genes and illnesses. This brings up the distinction between frontier and textbook science, a topic which is often misunderstood by the general public. Because of this, statements about having a government profile for potential terrorists become very concerning. Claims of this variety may be misconstrued into truths that can endanger our society. As this industry grows, the public must take it upon themselves to become educated about both implications of our genome and the importance of environmental factors.

  8. Jorge Castrillo 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 would rather not know my genetic profile. There is not enough knowledge about genetics to give people any solid answers regarding their genomes. The mapping of my genome could find that I have a particular gene that increases my chances of developing a tumor after the age of 45. This would me one among several other genes, some of which are unidentified. One of my unidentified genes could counter act the gene that increases my chances of developing a tumor. Another gene could increase my chances of me dying before I even reach 30. The science behind genetics is simply not strong enough for me. If I were to get my genome mapped it would be because my genes could be fully interpreted and analyzed. Where genetics are right now there are to many uncertainties. I feel that if someone showing me my genetic make up would worry me more then help me. I would have a feeling of paranoia with me constantly. For me, at this point, the ignorance of my genes is bliss.
    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 do not think that the “web 2.0″ generation will handle the issue of genetic information well at all. There will be attempts to maintain the privacy of genetic information but I strongly believe that eventually information on a persons genes will become hazardous. The steps taken towards racial and gender equality will be taken away. I see most of the progress and accomplishments because of the civil rights movement, ect. being washed away. People will take genetics as absolutes not possibilities.
    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?
    Genetic discrimination is likely to become a very significant problem. I would not forego a genetic test for fear of genetic discrimination. I understand that knowing my genetic code could, and most likely would, help doctors diagnose and treat any illness in my body. Insurance companies would also be able to create better health plan for me. My main protest is that there would be a type of genetic determinism. If there is a gene that increases a persons chance of becoming sick, and potentially taking more sick days, that person could see heavy discrimination in the work place. A law would have to be developed that prevent employers from discriminating against applicants that exhibit certain genetic traits/ tendencies. Still there would be the problem of people saying “my genetics made me do it”. Genes could pigeon hole people. My main objection is that there Brave New World will become a reality. The people that have high chances of maintaining healthy lives will get better jobs then others and finally there will be levels. A person will become classified by genome instead of ability.

  9. BonnieGiven says:

    To begin, I must say that I am quite shocked with the amount of development that has taken place with gene organization and distribution. While I can’t express dislike for the use of genes to predict threatening diseases, exploring ones genes to find the right love match seems preposterous to me. I am shocked how there are organized companies that are responsible for these kinds of activities and I have a difficult time taking it all seriously.
    1.) I definitely don’t consider my genetic profile to be an important part of knowing who I am or who I’ll be. Frankly, I feel like I have gotten to know myself very well with out having to study my genetic make up. I have learned things about myself through my interactions with others, from studying how my parents and relatives behave, and from growing older and smarter. While genes do make up a human, I don’t believe that it is a requirement for people to know about their genetic make up. Many people are very in tune to how they are at their present stage. As for the future, not knowing how one will end up is one of the surprises of life. Would people really want to know what they will be like in five or ten years? What if they found out that the future didn’t look as bright as they thought? Being a human is NOT knowing everything about yourself and living with it. Humans have doubts and I don’t think we should have to have everything mapped out. The only circumstance that I would consider getting part of my genome mapped is if one of my family members had a fatal disease that had the potential of running in the family. I think this is one of the very few circumstances where genetic mapping is acceptable. A lot of diseases could probably be spotted towards their earlier stages if humans were able to find out what they were at risk of at an earlier time period. Other than this, I am not a heavy supporter of genetic mapping and feel that it is yet another component of trying to control and perfect the human species.
    2.) I think the “web 2.0 generation” will first take on the issue of genetic information and privacy with caution. At first, they may seem more skeptical to who they share their genetic information with , (if anyone), and will be careful not to be it all out there on the web. However, like any sort of private information, I think that this initial wariness will eventually fade. A few years ago, people would have thought it very strange to make many facets of your life public on a social website, (like facebook). However, this is consider “normal” today and people don’t think twice before putting their hometown, cell phone number, or email address for everyone to see. Likewise, I think there will eventually come a time when sharing genetic information on the web won’t be a big issue. I can imagine all the games that will arise from sharing genetic information, (especially those involving romantic involvement). David Magnus poses the question: “Or is there really a generational shift, where we really are facing a group of people…a generation where they just don’t care?” Unfortunately, I feel like this generation is definitely possible. If people become comfortable sharing their genetic information on the web, (which is extremely personal data), it is possible that as time goes on people will become to not care what they share with others. In other words, this process may just become second nature.
    3.) I do think that genetic discrimination will become a significant problem as more and more people get genetic tests. It is ridiculous that people could be discriminated to get insurance or a job just if they had a PROBABILITY for having a certain disease. Diseases are human problems and there are many smart, intelligent, people with diseases who have high-status jobs and are very successful. These people aren’t discriminated against, (unless they are truly incapable of working), so why should people who only have a potential for getting a disease be? I would probably forego a genetic test in fear of discrimination. I wouldn’t want to be judged because of something that is a part of my natural genetics and , more importantly, probably beyond my control. This sort of discrimination is indecent and intolerable. Are people going to no longer let individuals with anxiety disorders no longer have insurance or be hired at a job? Some of the most brilliant and successful humans have anxiety disorders. What about eating disorders? These are things that can be seen and known. While it isn’t ethical to discriminate against people with disorders, it isn’t humane to discriminate against people because of their genetic make up. What is this world coming to?

  10. christine says:

    We have lived for ages without knowing anything about our genetic profile and we seemed to get along just fine. While our genes do provide us with insight into certain part of our lives (physical qualities, predispositions to certain diseases, etc.), it does not take context into consideration. I believe the point was clearly made in another post, “The Future of Technology: ‘Moral Machines’” by Wendell Wallach and Collin Allen, where a piece from the movie I, Robot is discussed in which machines do not have the same capacity as humans to reason. While a mapped genome can tell you what percentage of chance you have to get a certain disease it cannot take into account whether you plan on eating healthy and getting exercise or sitting on a couch eating potato chips. Humans have been gifted with a power to use common sense and reason, which is what sets them apart from every other species. It is reason that is responsible for how far we have been able to advance and has brought us to where we are today. If we leave who we are up to a computer that simply maps our genome and reduces us to a series of letters on a piece of paper, it does us no justice whatsoever. I believe humans are more than just a genome and it is an insult to reduce a person to simply that. While a genetic map could help us gain insight into solutions to improve both the quantity and quality of life, we should not rely on it to describe who we are as a person. There is so much more to us than that and even if it could help my health, I do not think I would consider getting my genome mapped simply because it is unnecessary. I would much rather let my life play out the way it is supposed to than alter it. If the human species has lived life without it for this long, we can certainly live like this for a little bit longer. Besides, our population is increasing at uncontrollable rates anyways; I think I plan on taking one for the team and dying when nature planned for me to die.

  11. ADewey says:

    Currently I don’t view my genome as a significant part of who I am because it’s just a jumbled mix of 4 base pairs in an order that we don’t fully understand. Sure, I could submit a sample to 23andme and see my “genetic predispositions” but that’s just the thing, they are only probabilities based on genotype. I think what our society is failing to realize is that our genome is not an absolute reflection of our phenotype, the parts of our genes that are expressed. As for leaning my “genealogy” or ancestry by submitting a DNA sample to “GeneTree” and other sites like it, would be pointless to me. These sites work by taking your DNA and comparing it to what they consider the “standard” genes of certain elasticities. The problem with this is that the sample sizes of the genomes used to define the “standard” for a particular ethnicity are way too small to be absolute.

    As for genetic discrimination, I’d be incredibly worried that without enforced rlation.

  12. ADewey says:

    Currently I don’t view my genome as a significant part of who I am because it’s just a jumbled mix of 4 base pairs in an order that we don’t fully understand. Sure, I could submit a sample to 23andme and see my “genetic predispositions” but that’s just the thing, they are only probabilities based on genotype. I think what our society is failing to realize is that our genome is not an absolute reflection of our phenotype, the parts of our genes that are expressed. As for leaning my “genealogy” or ancestry by submitting a DNA sample to “GeneTree” and other sites like it, would be pointless to me. These sites work by taking your DNA and comparing it to what they consider the “standard” genes of certain elasticities. The problem with this is that the sample sizes of the genomes used to define the “standard” for a particular ethnicity are way too small to be absolute.

    As for genetic discrimination, I’d be incredibly worried that without enforced federal regulation that society will discriminate based on genotype instead of phenotype.

  13. Chloe Wilson says:

    To begin, I’d like to address the ideas expressed about the potential effect gene sequencing has on future planning. Already there are applications on Facebook, for example, that allow us to combine a picture of our face with a significant other or celebrity—imagine if we could combine certain aspects of our genome to create such theoretical progeny! From a very young age, we could already be acutely aware of our genetic predispositions, giving us insight into our future. Our parents could potentially know, at the moment of our birth, if they must plan financially to send us to college, or if we will die from some genetic disease before we reach the age of 18. We could screen our potential mates based on genetic profiling, picking the most compatible matches as determined by particular genetic tendencies and inclinations in our personalities. Essentially, future planning would be written out for us in a series of base pairs, rather than left up to change. In terms of important life choices, we could potentially have the ability to map out any roadblocks, weaknesses, or hazards in our genetic coding, as well as position ourselves in a way that best uses our strengths so that we can be successful in the future.
    While this is intriguing and exciting in a sense, I find it absolutely frightening, as well. Having the technological capability to completely eliminate guesswork from the future could reap devastating results, because we could shape our lives solely on hypothetical genetic phenotypes (and there are so few that can be determined as absolutely guaranteed from a particular genotype). For this reason, we would come to neglect the factor that the “nurture” aspect has on which genes are actually expressed through proteins, as research has begun to show varies based on our environments. In doing so, we would not be preparing ourselves for any possible curveballs, and pinning all our plans on the expected (but not guaranteed) genetic outcomes could simply set us up for disaster.

  14. Vicky says:

    The first thought that comes to my mind after reading this article is that knowledge of one’s genotype undermines the laws and random beauty of nature. I might be letting my emotions speak when I say this but some of the best things that come in life are unpredictable. Predictability is overrated and takes away from the natural randomness and beauty of life. Knowing your genes and genetic likelihood of developing certain phenotypes is only several steps away from the technology seen in Gattaca. Imagine an extreme scenario, like the one seen in Gattaca where you learn that you are 99% susceptible to die of heart disease before the age of thirty. This certainly does not GUARANTEE that you will die an early death, but the knowledge of this information and an inclined feeling towards hopelessness could prevent a person from enjoying his or her life fully.
    Of course, this could work in your favor. The environment plays a huge role in determining a person’s phenotype. An individual could have that 99% chance of heart disease and still go through all the right steps to live a life free of any heart complications. In this way, knowing your genotype and predisposition to disease could help you plan ahead to ensure that environmental factors will prevent such a disease from ever becoming a problem. Genetic mapping can and has proved to be beneficial, especially in dealing with disease discovery and treatment.
    The topic of allowing your genetic map to be open to the public is another matter though. The Internet, among other things is the prime location for individuals to be susceptible to things such as identity theft. The fact that your genomic map also gives ample information about the genetic information of those related to you also is a big ethical issue to consider. If yours or a family member’s genetic map was available on the internet or source, employers and insurance companies could use this information to discriminate against you, regardless of legality or not (people seem to always find ways around the constraints of the law). Perhaps individuals of your family have suffered from heart disease and it is assumed that you are predisposed to being susceptible to such a disease in the future; insurance companies might learn this and refuse to cover your health care. On this level, I feel that you should be able to retain the privacy of your genotype and if we do reach this level of sharing our genetic maps, legislation should be carefully considered to prevent endangerment of identity and potential discrimination.

  15. Nairie says:

    Having access to one’s genetic information can be both advantageous and detrimental. It can be very helpful to know what genetic diseases you have or what diseases you may be predisposed so that you are prepared to make any necessary lifestyle changes. The post above gives examples of different brands of genetic tests, and the advertisements make it seem like the process is easy and simple to do. But what the ads do not take into consideration is the psychological impact that can result from knowing your genetic information. It is far too easy to dismiss consumers of these products as individuals who do not care too much about the results of their genetic information, as David Magnus mentioned. Although knowing our own genetic profile does not define who we are, having that knowledge can affect how we view ourselves and our futures. As human beings, we are taught to make independent decisions that will affect our futures as adults. The decisions and choices we make can be affected by the results of a genetic profile, because our genetic make-up can be used to decide what kind of individual we become. Being able to have complete access to your genetic profile can be useful if you are completely prepared for the ramifications that may result once you become aware of your genetic make-up.

  16. Kaptajn5 says:

    I personally would not want to get my genome mapped just to know what I am predisposed to. The only time I would consider getting it mapped is if I fall seriously ill and that will help doctors to see if I am predisposed to that certain disease. Furthermore, George Church and Steven Pinker both put their genetic make up on the web in order to “debunk some of the fears people have about genetic testing.” These two men are well known and less likely to have trouble finding a job, because of their genetic make up being in the open. The Genetics Information Nondiscriminatory Act may be in effect, but it still doesn’t prevent companies from finding other pretext to fire or deny a job offer to a person. Also, what happens if an individual is wrongly accused of a crime, and it is found that he has a genetic disposition to violent behavior? These factors can lead the jury to keep this in the back of their mind, while listening to all the other “evidence” that is presented. If people today are already wrongly imprisoned, can this information lead to more of this? Also, this information gained by the home test kits might be given to researchers and marketers, which may lead to personalized attention from telemarketers pushing prescription drugs for certain genetic diseases.

  17. Marshall says:

    I do not think knowing my genetic profile is important part of knowing who I am and I will never get my genome mapped. I do not think a person’s genome is the dominant factor of person’s future performance. The movie Gattca shows that a person with a more determined mind does better than a person with perfect genes. Moreover, human’s gene is 98% similar to chimpanzee’s gene and why chimpanzees still act differently from human. Oli Francis mentioned on Monday that even though identical twins have different personalities because the genes are read differently due to the 0-3 years old environment. A person knows themselves from learning to control their minds and actions, not through some dogmatic gene. A person will never know themselves until at the end of their life and humans’ life is a constant learning and exploring process. Secondly, As mentioned in the clips, James does not want to know some of the results of his own genome and turn those out to the outside. Even though, Congress passed the discrimination Act, but people will find another way to discriminate the person in the work place or in life. Further, a person cannot get a new genome not like the social security number when there is a indentify theft. A genome test also affects the privacy of the person’s parents’ and children privacy. “Web 2.0” will not handle the issue of genetic information and privacy because the government cannot even control the access to such a large data base. Lastly, I do not know why humans are so afraid of diseases. If a person never experiences the bad feelings by being sick, how can they know the preciousness of healthy? Getting sick is a part of human life. Also disability does not mean the person is useless. The Olympics paralympics’ athletics even runs faster than a normal human being. I think we are too afraid of life.

  18. LF says:

    The debate surrounding personal genetic testing and consumer privacy seems to me to be analogous to concerns regarding credit card use. For both, personal responsibility – which goes hand in hand with consumer choice – is key. Credit cards are convenient to use but come at a cost, namely potential incursion of debt and susceptibility to credit card fraud. Likewise, private genetic testing services could improve clients’ health by providing a personalized basis for preventative care. On the flip side, there will always be the potential for loss of privacy (and with that possibility, other unforeseen negative consequences). If you use a credit card, you’ve decided the benefits of doing so outweigh the costs; when it comes to genetic testing, it too is up to you as an autonomous individual to decide if opening your genomic Pandora’s box is worth the risk. While personal responsibility should make up the mainstay of any matter, few people I know would feel as confident using their credit cards as they do if no government regulation of the system existed whatsoever. I imagine the same logic applies to commercial entities in the business of direct-to-consumer genetic testing; basic regulations should be put in place to ensure – at the very least – that results are reasonably accurate and that confidential information isn’t being bought by or sold to interested third parties.

  19. brennan nacario says:

    The environment is perhaps the most influential factor of an individual’s development. A person’s character and traits may be predisposed by their genes; in most cases, however, the environment molds the person much more so than genes. While someone may be predisposed towards an increased risk of heart disease, if that person upkeeps a moderate cardiac workout schedule, then that information means nothing. In our day, I think most people don’t take genomic profiling too seriously because the general consensus is that the current tests only provide consumers with predispositions rather than with concrete fact. I personally disregard predispositions because with the right environment, those predispositions are rendered meaningless.
    In the future, maybe even the near future, people might begin to take their genomic sequences more seriously than they do now. This type of thinking will only come about as genes are linked to concrete facts. Minor predispositions (such as those with a low likelihood) are exactly that; minor and should not be afforded so much as a second thought. As long as the environment does not perfectly suit the emergence of the malignant genomic predisposition, is is very likely that the behavior would never appear at all.
    The issue of privacy, though, is relevant and meaningful. As technology progresses and more and more genes are linked to specific diseases, someone’s genome test that was taken 20 years prior may suddenly have significance. In the blog, it was mentioned that someone who subjects himself to a gene test not only compromises his privacy, but also those of his relatives and immediate family members as well as all of his offspring. In a society that may shift towards one that faintly resembles Gattaca in the future (in no way am I suggesting that society is currently on that trend), I believe this is a very important point to consider. At the time of the test, you will only be affecting you and maybe your immediate family. However, your children, as well their children, will inextricably be linked to your results. Your children may be discriminated against from the beginning of their lives on account of your deeds. This is only the beginning of the ethical questions that gene sequencing poses. As the technology inevitably progresses, more questions will pop up and it will be even more difficult to find solutions in agreement with ethics and moral standards.

  20. Graden Rea says:

    My genetic profile is a list of PREDISPOSITIONS that may or may not affect me. Hence, my DNA does not define me. However, my DNA both helps and hinders me from being the person that I wish to be. By learning more about myself through my DNA, I could better change myself into the person I wish to be. By reading my DNA I may discover latent skills that I never suspected. It would be really cool to learn this intimate knowledge about myself. But, since the cost of this knowledge is unknown, I suppose that I must remain in the dark about it until a later time. The fact that there is little privacy regulation for this information and it may affect distant relatives makes this a scary technology.

  21. onefatrunner says:

    We live in the age of information where information is becoming increasingly readily available online for everyone to look at. With regards to personal genetic information this could be a potential disastrous situation. As of now genetic information is full of probabilities and predispositions that fail to take into account the environment and social factors in which the person developed. However with information becoming increasing available, in the future we could see discrimination based on one’s personal DNA. That many of the companies that perform genetic testing are online raises even more concerns. I worry about have my genome tested due to insecurity of web. Personally for me my genome is a private thing that I feel should only be shared with family and medical personnel. I believe that employers should not have access to my genetic records, except in special cases, as this could lead to discrimination. So far society has functioned without the need to study everyone’s genome, why should it all of a sudden become dependent upon it to function. I agree with what they were stating in the videos with how dangerous just putting your genetic information on the web for everyone to see can be. In the future it may have serious implications not only for you but also those close to you including family and friends. Is it fair that by posting part of your genome for the world to see could affect say an identical twin who never wanted to know his genetic make-up? Would people begin to treat him differently based on findings from your test? I believe that society must decide whether to keep genetic information private or whether to make it accessible to all. Because knowing one person’s genome could potential affect so many people it is hard to see how they could be a middle ground between privacy and public knowledge.

  22. DF says:

    I don’t consider my knowledge of my genetic profile to be a crucial part of knowing who I am. Who I am is represented by my interests and knowledge, and how I interact with others. My genetic profile may identify physical characteristics about me as well as aspects of my personality, but it also contains information that is circumstantial. My genetic profile can tell me what diseases or others characteristics I have a predisposition for, but there is no way to know whether these diseases or characteristics will ever be realized. It is important to take this degree of uncertainty into account when examining a person’s genetic profile. I think it is unethical for insurance companies or law enforcement to discriminate based on characteristics that one has the potential to develop. People should only be held accountable for actions that they physically carry out. Insurance companies should not be able to discriminate against those who have or could possibly develop medical conditions. Genetic profiling has the potential to be abused in a variety of fields for many different reasons and, consequently, the use of genetic profiling and the acquisition of genetic profiles needs to proceed with much caution and with much regulation.

  23. Brad Chun says:

    A number of ethical issues are raised by the wide availability of genetic testing and sequencing. Since your genes are indicative of not only yourself, but also your ancestors and future progeny, the notion of consent is raised. One may argue that the autonomy of future generations cannot be respected if their genes are sequenced without their concurrence. I believe that since the sequence of one’s genes is fixed and indicative of future progeny, it should be made illegal for companies to publically post or share such data. This is not to say, however, that genetic sequencing is wrong, because it is proactive and beneficial to be aware of what we are genetically disposed to so that we may take preventative measures in order to better ensure our health and quality of life. The can be justified by both Ross’s prima facie duty of self-improvement, as well as by Kant who could make the maxim that we ought to prevent disease proliferation if possible. If genetic data is treated with responsibility, then genetic testing is also in accordance with utility, because the knowledge we gain from such tests could affect our lifestyles and lengthen the time we have to live. The potential for misuse by health insurance companies and other agencies is present, but through careful regulation of the privacy of genetic data, genetic testing can serve as an important preventative tool in medicine.

  24. Sonali Ekanayake says:

    I feel that genetic testing is an individual and private matter. By collecting genetic information and storing it, there would be an issue for treating people as Kant would say means instead of ends. This genetic information if accessible online and able to be shared across the global community via the internet, can potentially cause stereotyping and discrimination. People may begin to categorize those genetically tested by risk of potential disease based on genetic information. In this situation people would be used to characterize individuals into a population of susceptible disease. The post states that genetic information can adversely affect future employment if companies believe you may harbor a future disease. Also, once the information is online, there is no regulating it. People will not be informed about how it is being used, which is a serious ethical matter because it does not respect autonomy. Individuals should have the right to be tested, for their own sake. The tested people must be able to decide how their personal information is used and stored.

  25. AMurphyHagan says:

    Q: Do you think genetic discrimination will be a significant problem as more and more people get genetic testing? Would you avoid a genetic test out of fear of discrimination?

    According to Rick Weiss, the stated purpose of such testing is to identify the genes associated with an increased risk later in life. What do we do once we have this knowledge other than to work to eliminate or modify the gene into a more benign form of DNA? It seems once we have this knowledge and, accept it as true, the duty to “do good” would demand that we eliminate/alter the gene. But is it ethical to act so preemptively?

    As, Weiss pointed out, these web services function for profit. I am concerned with how health insurance companies could immediately turn risks identified in genetic profiling into “pre-existing conditions.” And that is nothing short of gene discrimination. As a person who has a history of Alzheimer’s disease in her family, I would not want to be discriminated against on the grounds of my grandparent’s disease. Accepting their disease and the risk posed in my DNA as equal to actually having the disease is simply ethically unacceptable.

  26. Adam Trujillo says:

    Newer advancements in health and technology has led to a medical revolution where information, that was once an unexplored territory, can be examined through a simple DNA test. These new technologies raise many ethical implications including, the right to private knowledge of a person’s genome and the unethical use of information the genome provides, i.e. discrimination. Although these technologies are major steps in the health field, the new generation does not realize what the indirect impositions this technology can bring about. In a world where information is wanted now, I believe we are overstepping boundaries and making information much too public. The idea of a genomic database could hinder not only those who are participating in the test but all those related will essentially have their genomic sequence available to anyone. This loss of autonomy and privacy could alter how they live their lives and even how they are perceived in this world. Genomic testing can and will be very helpful in preventative health care, but the idea of making it a public measure has too many ethical implications to be accepted as a common resource at your fingertips.

  27. Nicholas Giustini says:

    Theoretically, the notion of testing people to determine what diseases they are susceptible to and what medications work best for them seems like a great idea. However, practically, in this day and age, privacy is not necessarily a luxury we have. Sending your DNA to a company for genetic testing is a bad idea, even if they have a confidentiality agreement. The data must be stored on a computer, and is thus subject to being stolen; laws could also be changed, making it required that all genetic sequences be made public. While not likely, there are all sorts of things that can happen, which are out of your hands right after you send your DNA to be sequenced.
    Initially, from a utilitarian perspective, independent gene sequencing seems like a good idea, as it provides good without threats of harm (knowledge about potential diseases). However, once your genes have been sequenced, you have lost some of your autonomy, especially regarding your right to choose what you want people to know about you. As the post said, we don’t know what technologies will arise in ten years that will derive new information from these sequences. For the time being, I don’t think it is best to give a private entity access to information that can have an effect both on your children, and on your children’s children.

  28. Amanda says:

    On a not entirely related subject, a person’s genome can not tell them who they are who or who they will be. The environment in which a person lives or lived has such a huge impact on who he or she becomes that a genetic map alone is just not enough. However, I think that genetic mapping to find out about a predisposition to a disease, whether entirely preventable or not, is more than worth any risk of discrimination that may come about in the future. If a person can make lifestyle changes to prevent a disease or make their life easier if they get the disease then go for it. What is really important is having the ability to decide whether or not a person wants to know the information about him or herself.
    Unfortunately, young people today rarely think about the consequences of losing their privacy, and I think people will share their genetic information and come to regret it later. People are already regretting putting up pictures of themselves on Facebook. I’ve had friends be expelled from school or lose jobs because of pictures or postings on Facebook and public genetic mapping has the same potential.

  29. Victoria Watson says:

    After reading the blog and watching the posted videos, it is clear that there are definitely benefits and drawbacks to the possibilities of genetics testing. Personally, I do not currently have a desire to know my own genetic sequencing, however I do think that the this technology to do so can become very helpful in discovering ones predispositions for disease, or learning which medical treatments may be the most appropriate. It is important to focus on the ethical issues that consequently arise with the topic of genetics and privacy. With sites such as 23andme.com or scientificmatch.com, individuals are ultimately putting their own private information out among the public. The blog recognizes that within the current internet generation, young people have been noted as “over-sharers.” I can definitely understand how this could become an issue as genetic testing becomes increasingly more popular. Since genetics are connected to our ancestors and future family members, the question must be asked, “who decides?” If I were to openly share my genetic test results, they include a direct representation of my parent’s genetics, and thus, is it acceptable for me to do so without their consent? In addition, I am strongly concerned by the issue of genetics discrimination. I know Gattaca provided an extreme example of the importance of genetic profiling, however, if employers for example were to begin giving job offers to the more ‘healthy’ individuals, or if healthcare was rejected to a grandchild, then the use of genetics testing would be unfair. There are many ethical questions that are raised in response to this topic, and I think that until legislation is properly put into place, our safest option to protect ourselves is to keep any genetic test results private.

  30. Randy Holaday says:

    Genetic testing seems to be a very slippery slope. This article brings up some very good points about how the commercialism of genetic testing has some scary potential implications in regards to privacy, i.e. government infringement, etc. Yet ultimately (and ethically), everyone has the freedom of choice and the right to autonomy, and therefore the right to make whatever choice they want to in regards to genetic testing. The thing that complicates this, however, is that an individual’s genetic test can also apply to future offspring, who have no control over this information being shared. This argument is interesting, but I think using it might overcomplicate the issue, bringing in discussions about where does life really start and if “potential future children” have rights to privacy. Thus, to accommodate this, I think that, ethically, consumers need to be fully informed on the implications of these genetic tests, more so than they are now. And because all the implications aren’t fully known yet, I have to believe that it is far too early to be offering this service on a consumer level.

  31. Brian Winter says:

    This article clearly demonstrates the awesome potential of genetic sequencing, both for medical breakthroughs and personal risk. The article brings up some good points about the potential challenges to personal security, privacy and anonymity associated with genetic testing. The idea that our personal genetic code may be stored insecurely or even worse, sold to companies who share this information with insurance companies and others is a very real danger, and personally, one that would prevent me from submitting my DNA for sequencing. Our personal health information should be protected by a basic right of medical confidentiality, similar to doctor-patient confidentiality. The inability of online-based companies to protect this information is clearly the biggest obstacle to the growth and success of DNA sequencing to contribute to and create new treatments and medicines. However, with recent modifications to our health care system, the guarantee of basic health coverage to all citizens would seem to mollify many of these fears of being denied coverage or targeted by health employers, and will hopefully be a step towards public confidence in this new phenomenon.

  32. nschwedhelm says:

    Having your genome sequenced now does not seem like a huge deal because most people do not even realize how important and private their own genes are. Websites like 23andme; which allow anyone willing to pay up to $399 to have their genome sequenced raise many ethical issues. One issue raised revolves around privacy. Websites like facebook, myspace, and personal blogs have skewed the definition of privacy and private information. The click of a mouse or the touch of an iphone can take you to anyone with an accounts personal webpage with their personal bio and picture. Now imagine attached to their personal bio is their sequenced genome. Although right now there is very little knowledge about what gene causes a predisposition for a certain disease, one day their won’t be. What if this information got into the hands of a persons insurance company? One could argue that there is the potential for discrimination when it comes to what jobs people are offered due to employers knowing they are predisposed for a certain disease. They also could run the risk of being denied by health insurance companies because they would be a huge liability and cost for insurers. This is just one of the many ethical issues that come about from affordable and accessible genome sequencing. I am not arguing that making genetic testing affordable and accessible is a problem, however I do think that people need to be well informed about what exactly sequencing their own genome means, the information it provides them with, and the privacy issues it can bring about.

  33. anne volmert says:

    One of the ethical considerations related to this issue is the right to privacy and the right to choose who and under what circumstances genetic information is disclosed. Who would have access to and control over that access of disclosing genetic test results? Furthermore, because results of genetic testing not only affect the individual tested but their family (current and future) an issue of consent is also raised. As technological advancements are made, how can those who have undergone testing be assured that results of the test will be kept confidential? Particularly if the information is placed online, because once information is put out into cyber space it is out there for good. This also raising issue related to protecting the autonomy of future family members who would not wish to have such information accessible via the internet.

    Accessibility, cost, and reliability of testing are further issues raised by this technological advancement. Although genetic testing is currently ‘available’ the cost to have it done are such that a very small percentage of the population could truly have access to it. Therefore, it could build higher/deeper social and monetary barriers between members of society, providing and potential advantage to the rich.

  34. ASalas says:

    Being able to understand and find your human genome from a swab of saliva is an incredible advancement in technology. The ethical question involved is whether people should have access to this type of information. This type of information could promote stereotyping and discrimination by future employers. According to the principle of utility, the consequences of an action must have a happy outcome. From genetic testing, people may be able to gain the knowledge of what type of diseases they are susceptible to, but this does not necessarily bring about happiness. In fact, I believe the knowledge of one’s own genome will cause a high amount of distress, anxiety, and unnecessary emotional burden. New advancements in genetic technologies may prove very affective in improving people’s health, but the key to overall success is utilizing this technology in an ethical and responsible manner.

  35. Meridith says:

    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?

    From an ethical standpoint I think it is irrelevant to evaluate genetic testing based on if the “web 2.0” generation will cautious with genetic information or not. The principle of autonomy supports that rational individuals should have the choice to decided if they would like to participate in genetic testing. An individual has the right to know genetic predispositions for disease, personality traits, or even suggestions on medications that might work best for them. It should be the persons choice if they want this information or not. My biggest concern with genetic testing is the quality of interpretation. This is medical information, to some is a different language. The translation is the responsibility of the genomics companies. There are too many misconceptions that can be made without proper explanation of the test results. For instance, its reasonable that a women (without medical interpretation of her test results) would assume that because she didn’t test positive for the “breast cancer genes” she doesn’t need to get mammograms. If these test cannot be properly be evaluated by professionals, the genomics companies would be doing more harm than good. Thus, the genomics companies duty of nonmaleficence would be violated and providing genetic information would be wrong.

  36. Meridith says:

    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?

    From an ethical standpoint I think it is irrelevant to evaluate genetic testing based on if the “web 2.0” generation will be cautious with genetic information or not. The principle of autonomy supports that rational individuals should have the choice to decided if they would like to participate in genetic testing. An individual has the right to know genetic predispositions for disease, personality traits, or even suggestions on medications that might work best for them. It should be the persons choice if they want this information or not. My biggest concern with genetic testing is the quality of interpretation. This is medical information, to some is a different language. The translation is the responsibility of the genomics companies. There are too many misconceptions that can be made without proper explanation of the test results. For instance, its reasonable that a women (without medical interpretation of her test results) would assume that because she didn’t test positive for the “breast cancer genes” she doesn’t need to get mammograms. If these test cannot be properly be evaluated by professionals, the genomics companies would be doing more harm than good. Thus, the genomics companies duty of nonmaleficence would be violated and providing genetic information would be wrong.

  37. miki ueoka says:

    I think that genetic testing can be particularly useful, and will continue to be, in the realm of health care. There are various diseases that can be looked for, and determining how prone an individual is to not only acquire a disease, but also to pass on a genetic disorder to progeny, can help determine treatment for diseases that may be otherwise hard to identify. While companies like 23andme.com can effectively match an individuals’ genome with known markers for genetic diseases, it is unsure what happens to the data. The company most likely will save the genomic data as well as the individual’s survey information; until solid legislation over what happens to this material is put in place, there are many ethical issues that arise. If it can help you, why not do it? Using the ethical principle of utility, it seems as though the consequences of increased health care outweigh any other negative consequences. On the other hand, what if information about genetic mutations arise detailing “incriminating mental or physical disorders?” I think that we should not rely on an individual’s genome as a basis of judging, whether for jobs or even for dating, but in an age where information is everything and also easily accessible, we should wait until there is solid regulation regarding this precious information.

  38. Zach Shikada says:

    I strongly believe that my identity is based far more on my personal choices than on the contents of my DNA, and it would be utterly foolish to define anyone by what a few proteins and amino acids can imply.
    With that said, I do not agree with making the mapping of one’s genome so public simply because of human likelihood for abuse, such as quarantining all those “genetically predisposed” for quarantine or, God forbid, those “genetically predisposed” to be a terrorist. If it is not already apparent, there is a huge violation in regard to Beneficence, as this is obviously a significant breach in promoting the welfare of the individual.
    Also, while individuals are part of their own family and genetic line, individuals are individuals. The personal choice of each individual should stay personal and others, even within said individual’s bloodline, should not have to face the repercussions of said individual’s actions. While there are many actions that cannot be helped, genetic mapping seems only to be a novelty item that could potentially lead to a breach of privacy for the individual’s along that person’s genetic line.
    Thus, due to the potential for discrimination,and thus in order to prevent a serious violation of utility, it would be impossible to support the publicizing of genetic information. While it would be a personal choice on the part of that individual, he or she would condemn the rest of his or her bloodline to whatever the findings of that genetic mapping would reveal.

  39. psychoticnewt says:

    Promising a great deal of enticing benefits including the potential for highly personalized medical care, the implementation of early preventative measures in combating diseases or disorders, and an increase in data available for research and development purposes (determining causal factors, alternative treatment procedures, etc.), the benefits of genetic testing at first seem overwhelming. However, upon closer examination, concerns over the future implications of utilizing a new technology still in the early stages of development with regard to individual privacy, and subsequently, maintainable autonomy emerge as central to evaluating the ethics of said advancement. With the emergence of such websites as 23andme.com and The Human Genome Project promising to create a genetic profile for any individual requesting such services, individual privacy is automatically compromised. While one can attempt to monitor the distribution of this information, ultimately, once information is out on the web, it becomes available for all to view and access. In accordance with this notion, an assessment of the potential implication(s) of the availability of highly sensitive, personal information with regard to future generations proves essential. While an individual of our current generation may elect to submit their DNA for genetic testing (as is their right as an autonomous individual), a family member of a future generation may not have provided their explicit consent to have their genes mapped; unfortunately, since the genetic sequencing of family members is extremely similar, at the very least, a basic knowledge of the genetic profile will be known, thereby violating the autonomy of members of future generations.

  40. Brianna says:

    It seems that with the amount that can be known about genetic testing, very little is known today, so who should be administering genetic testing? Genetic testing has become more accessible and as Rick Weiss brought up these test were originally used as research tools. I do not believe that people need to fear genetic testing, but they should definitely be wary of it. People are giving their information way to communities of people that they have never met and unlike a SSN, it definitely needs to be acknowledged that you cannot get a new genome. Genetic testing used to be administered by doctors, so why the huge leap from doctors to an online source? You are not just giving away your genetic information, but anyone who is related to you as well. However, the sensitivity level is going down from generation to generation, but hopefully it won’t take one person getting misled by these online agencies before people realize what needs to be kept private.

  41. Alex Harkins says:

    I don’t think anyone would argue against the fact that there are potential benefits to obtaining information through genetic testing. With certain information regarding potential risk to health issues, one can be more prepared. However, the article discusses reasons why having such information is not a good thing, and keeping it a secret is difficult. Confidentiality raises issues in the Health Care Industry in every aspect, and in this case, it deals with discrimination due to genetic knowledge: gene discrimination. Potential employers or health insurance providers could discriminate towards someone who has a family history of heart attack when that person has no control over that characteristic of his/her family and shouldn’t be measured by it. That is in no way ethical, and the way we are headed if we aren’t careful.

  42. Margaret says:

    After watching the first video, the questions being raised reminded me of the Tom Cruise movie ‘Minority Report’, in which the police had the power to see into the possible near future and prevent horrendous events, such a murders, from occurring. Yet, after a hunt for a wrongly accused man everyone came to the realization the psychic forces could only see what could be, but people were unpredictable and could change their futures. Although genes and psychics don’t match, and people cannot choose their genes, we are still playing with the same fire. The ethical issue here is when is it acceptable to remove someone’s liberties simply because they are predisposed to one thing or another. Although proponents of the idea would like us to believe it would help prevent individuals from developing such diseases, in many cases it is out of our control. For instance my family has a history of heart conditions and high cholesterol, yet should the government or my insurance company keep me from eating a cheeseburger even thought I show no symptoms? Or if I was found to have the gene that predisposes me to violence, should I be locked away to protect the rest of society, such as the people arrested in the movie for crimes they never committed. When it comes to health issues we tend to panic and forget the individual has the right to autonomy. So while they may have every predisposition under the sun, and take no preventative measures, it is their body and it should not be up to others to say how one should act or be treated. Although it sounds like a bad science fiction movie, we do need to monitor how we obtain and work with information our genes provide. In a worst case scenario if we remove people’s independence completely, even though it is for a good cause, we are no longer treating people as humans, but as pieces of hardware based on their genetic makeup, and who would want a world like that?

  43. Paul Bruno says:

    There are serious limitations to the genetic mapping which have not quite been worked out by scientists yet. People need to know the difference between a “possible link” on a certain gene for a disease and not mistake this with actually being diagnosed with a particular disease. This lack of education for genetics could pose possible widespread fear about certain genes which could pose problematic for people obtaining health insurance in the future which would justify an insurance company not insuring an individual. However, it would be unethical to not insure an individual for a particular genetic predisposition which they had no active choice in. Also, many genes are linked in ancestry which means that if one person were to have their genes mapped, they would also be likely violating their own family members privacy when they may have not agreed with the genetic mapping in the first place. If the implications of certain genes did point out the predispositions in a family tree, there would be serious ethical implications which would could jeopardize the health and happiness of a large group at the cost of one individual. This could also lead to insurance issues for other family members regardless if there genes had been mapped or not. If certain genes suggested increased contraction of a certain disease or for increased capacity to commit crimes, the government could justify preemptive measures against an individual who would have the ability to act against those predispositions or take the necessary precautions against these predispositions.

  44. mbpadilla says:

    Even though this might sound biased coming from a science major, I really do believe that even though you have no idea were your information is sent off to, that its important to know your genetic make-up. People might say, well you don’t really need to know, but the fact of the matter is your in charge of your own body and knowing your genetic makeup is important. Lets say you wanted to have a baby and you wanted to know what genetic makeup you have to offer your baby. If you find out that you have the harlequin genes then you become aware of potential predicaments you would like to avoid. Knowing is better than not knowing.
    On the other hand you run the risk of not knowing where your genetic makeup information ends up. Your autonomy is stripped away and in a sense you are stuck in a cycle because if you don’t send in your sample then you’ll never know your genetic makeup but if you do send in your sample you’ll never know where the result would end up. Overall I trust that people are generally morally good human beings and that if anything my genetic information would be used for a great scientific research project, but then again I am also a helpless romantic. I believe skepticism is key to not being fooled but its also a downfall of distrust. During most research people do not know that they are being tested and it leads to great discoveries. Overall if Ross’s prima facia duty of non maleficence best applies to this situation, no one is being harmed if you send in your sample.

  45. jcuadra says:

    The human genome project is something that I have always been curious about, yet never fully knew what it was about. In reading this article I feel almost the same as I did about the article with tailoring a child to the way the parent wants. In this project, although there is great potential to understand many of the diseases, etc. that many of us encounter, do we really want to have a tag attached to us displaying for the world to know all of our genetic issues? I would think that many would do this just to know themselves better, to perhaps brace themselves for what may be ahead of them. But to do this to basically blast it on the web and try to make others comfortable is unethical. Society is no longer allowing us to be created and maintained naturally.

  46. Alexandra says:

    I believe that getting one’s genome mapped is a science that could help us all live longer, healthier lives. We would have the opportunity to learn early in life what we should eat, how to stay healthy, and what preventative medications we should take to stop the genetically passed diseases and health problems to which we are predisposed. However, for all its benefits, this information could cause a great deal of harm if not properly protected from misuse and public knowledge. If a genome is brought into public knowledge that person is limiting the autonomy of his present and future family, who share the some or most of his genes. Family members would have less medical options to choose from if insurance companies reject them and their medical coverage is limited. While everyone has claim right to know one’s own genetic identity, no one has the claim right on someone else’s genetic profile. Therefore, if advances in medicine are to be made by the utilization of genomes, this information must be protected more securely than medical records in a hospital. An individual may be access to a printed record of his genome, but could never reveal it to the public, and could only show it to a family member with his/her consent.

  47. HeidiC says:

    I believe that genetic information is crucial to the advancement of society. There is so much information packed into the genome that is waiting to be discovered. This information can be used to improve the quality of life for many individuals and can also significantly advance society with an explosion of new knowledge of our blueprints. We should not stop the advancement of knowledge simply because we are afraid of negative outcomes. Information is very powerful and can always be used for both good and bad, which is why it is important that we discuss these issues before they arise so that we can prevent any inappropriate or unjust use of the new information. Although we do not know all of the future risks that may arise with these new technologies, we also could argue that we do not know about all of the future benefits. However, this does not mean that we should not proceed with care as time and our knowledge progresses.
    Ethical implications of this new information include the right to autonomy and principle of justice. Would our right to autonomy be taken away if more information was learned about us and we were seen as a danger to society? Like Margaret mentioned, I was also reminded of the movie Minority Report when reading this blog post. Could we be flagged or even arrested if we had the genetic potential to commit a crime? In addition, we have seen throughout history a tendency for people to be treated unjustly because of genetic differences such as race or having a disease or disability. Expanding our knowledge of our genetics could potentially increase this discrimination or it could eliminate it because the general public may understand these differences more, which may enable them to better understand and accept others with differences. Both will most likely occur and while more information about ourselves becomes available we should make sure to educate the general public so that new information is not misunderstood and used for negative purposes. We must also make sure to enact laws protecting people with genetic differences so that there is no injustice as a result.

  48. Shannon Johnston says:

    Today’s youth is obsessed with information. Whether it is through blogging about what they just ate for dinner or reading up on what a friend did last Friday or editing articles on Wikipedia, people love grabbing onto as much information as they can on the internet. I believe that if the internet were to provide tools to find out and share information about our genome, most young people would just skip past the disclaimers and go right to sequencing. I, even knowing the ethical debates, was quite intrigued by the MyGenome application at first reading because it allowed you to compare with famous people and your friends. It wasn’t until a few seconds later until I got over the “cool” factor and realized the huge possible repercussions of knowing the information. A lot of people probably would not get over the cool factor until it was too late and they already had the information in their hands.
    So no, I do not believe that today’s youth would be more cautious with genetic information. If a person does not feel uncomfortable posting compromising pictures of themseves or telling the world why they just broke up with their boyfriend on their Facebook status, why would they feel any more remorse for sharing these pieces of information — they seem just as innocuous as any other blurb. The problem is that if a future employer decides against hiring you because of a picture, you can learn from your mistake, delete the content, and move on. However, if you share your genome, your progeny from now until forever would have to live with those consequences. Mates may avoid you because you have a certain genetic predisposition, just as people avoid dating those with STDs now.
    This type of technology should not even be available to today’s youth. It is far too dangerous, and people will take advantage of it if given the chance.

  49. Zac says:

    I think that the web 2.0 culture needs to be cautious when dealing with the privacy of genetic information. I say this because there are too many unknowns. We do not know what all the uses of this information are, and that goes the same for all the ways this information could be abused. There is nothing bad about starting slow when it comes to privacy. The information needs to be protected, and when speaking of genetics this is also exposing of those who are related to you. So in order to protect the privacy of unknowing persons the issue of privacy needs to be taken very seriously.

  50. Jonathan Ang says:

    1. Yes, I do consider knowing what my genetic profile is to be an important part of knowing what or who I am. This is because my genetic make-up is responsible for a large part of who I already am today, and not knowing what it is in a sense leaves me ignorant as to who I truly am. However, this is not the same for simply knowing what my genetic profile looks like in its raw form (a long combination of the four letters). This in itself would be largely useless to me, as it would be meaningless data without at least some comparison to other genomes or insight into what the order of specific portions implies for me. So the answer is a bit mixed in actuality, because while I consider having insight into what a person looks like genetically to be important, actually getting there might take more time than I have left to my lifespan, and simply being aware of guesses as to the importance of certain sections of my genetic profile is far less important.
    Yes, I would consider getting my full genome mapped. I was honestly surprised that Dr. Watson would ask not to have sections pertaining to Alzheimer’s and other mental diseases mapped in his genome. To me, knowing those crucial parts in the genome is of the utmost importance and I would rather be aware of and take responsibility for my whole genome rather than the harmless parts of it that would be of insignificant value to me. While of course I can understand that our ability to read the full genome is still on a very primitive level and that our current level of diagnosis based on a genetic profile may be full of flaws, I still feel it important to accept the available information that we currently have. That is to say, supposing that I might have a few incriminating sections in my genome that were to be revealed, I think humanity and my peers would do well to understand that our current understanding of the genome could well turn out as incomplete, if not completely incorrect in areas, and that understanding this would lead to a greater degree of empathy and tolerance in the community. Because frankly, who would have a perfect genome? Or, who would not have less than ideal sections in their genome? That seems impossible to me, because there is no such thing as a perfect genome, as per the mechanisms of evolution. So I would want my genome to be sequenced in full, with the understanding that complete insight and knowledge of the information it holds to be currently beyond our grasp. Yes, people may misunderstand and create biases against me out of ignorance, but running away and hiding the truth about certain portions is exactly how unjust prejudices get wildly out of hand.
    2. Impossible to say. I think we would do well to address this issue properly, but I am not overly worried. I think the most important aspect would be to temper enthusiasm for mapping individual genomes with the understanding that we do not really know what information lies in the genome in full, or that our ability to read it is necessarily correct. Genes, and the bodies they determine, are wildly complicated, and the interconnected relationships that genes have with one another will take many, many years to fully realize and understand. Jumping to the mindset that we completely understand the human genome before we actually do, if we ever even get there, would in my mind be the greatest tragedy.
    3. There is that possibility, and this issue largely influenced how I answered question 2 above. Again, I think tempering discrimination and prejudice based on genetic information would be wise, for the reason that a genome is a tricky and long piece of fragmented data, and being able to make such damning condemnations based upon it would likely turn out to be brash and overly-confident in our ability to read it. And depending on the severity of such possible discriminations, yes, I would possibly forego having my own genome mapped.

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