Did 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.
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.
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.
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:
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 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?
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?
“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?
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?
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?
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