One of the most intimate consequences of advancements in genetic science is the personal choice to get tested, or not. Often, the abstract, theoretical progress of science inhabits journals and laboratories beyond the realm of public knowledge (something, by the way, which we’re hoping to combat with this program). Parts of modern genetics like the philosophical debate over free will and fate, the futuristic genetics of science fiction, and the genetic modification of our foods may seem one step removed from personal experience – after all, few of us regularly debate philosophy over dinner, pilot starships, or consider modified crops while grocery shopping. Perhaps we should all do all these things a bit more (who doesn’t want to cruise in a private Enterprise?), but on the whole, nothing strikes home quite so much as being confronted with genetic science and a simple, yet gravely significant, yes/no decision. Should I get tested? Or not? There’s no middle ground.
Why would I want to know about my genes, anyways? One well-studied and broadly relevant example is the genetics of breast cancer. Studies in the early 1990’s found that women who inherited certain atypical genes might have a cumulative lifetime risk of breast cancer of over 90% while women with more normal genes faced a lifetime risk of only 10%. A particular mutation of a particular gene (in this case, BRCA1 or BRCA2) could mean a woman is 9 times more likely to suffer through a distressing and life-threatening condition. Now, if you knew about some genetic mutation that raised your risk for a specific medical condition, you could take steps to try to avert the potential misfortune. Some women who discover that they possess a BRCA1 or BRCA2 mutation have undergone double mastectomies (removal of both breasts) to fend off breast cancer.
But then again, maybe ignorance is bliss. If you knew you were slated by your genes to inevitably lose your ability to walk, stand, and speak after about the age of 40 (as in the genetic disorder Hutchinson’s disease), would you really want to know? From the moment you knew, would that throw a pall over the rest of your healthy years? And unfortunately, the effects of genetic testing are not just limited to your life. Since genes are inherited, testing yourself can also have implications for other family members. Finding a BRCA1 gene in your body could also tell your mother, sisters, daughters something about their bodies. If they don’t want to know, can you keep it a secret that they have a 90% chance of getting breast cancer?
Some other examples: if a husband and wife were tested and discovered that a child of theirs would possess a 25% chance of being born with cystic fibrosis, might this influence their decision to have children? If you knew you were at an increased risk for heart failure, might you work to offset some of that increased risk by careful management of diet and exercise?
The decision to have your genetic code closely examined for nicks and flaws is a heartrending one. It’s a choice that faces people like you and me every day, all across this country and all across the world. And it’s a choice that cannot be relegated to scientific journals or pensive philosophers – genetics up close and personal. Would you want to know?
Eric
IHC Facilitator
April 3, 2007 at 10:33 am
“If you knew you were slated by your genes to inevitably lose your ability to walk, stand, and speak after about the age of 40 (as in the genetic disorder Hutchinson’s disease), would you really want to know? From the moment you knew, would that throw a pall over the rest of your healthy years? ”
As an ally of the disability community I find these questions very interesting because the underlying question is “do you think that disability is devastating, a tragedy, not a natural part of life that can be delt with like aging.” This reflects an ablist bias which I have seen destroy the lives of people with disabilities and sometimes even results in their killing. You can have a full life and have a disability, although the oppression that people face based on their disability doesn’t help. If I could know ahead of time that I was going to have Hutchinson’s Disease I would appreciate the time to mentally prepare for it and seek out people in the disability community that could serve as my mentors and I would see the importance of having good health insurance and work hard as hell to raise peoples concousness so that the community that I become disabled in would be a little more accessible and include me as a full human being.
April 3, 2007 at 1:47 pm
“This reflects an ablist bias which I have seen destroy the lives of people with disabilities and sometimes even results in their killing.”
This is a pretty severe accusation. The question is there for consideration: would you want to know? It is obvious that you would want to know. I think I would too. However, you can understand that there are people who might not want to know, for a variety of reasons.
This is part of the reason it is such an interesting question – not only to people feel differently about the answers, but the question itself raises more concerns.
Is there a bias in society against the disabled? Is disability normal human variation like different colored hair, or is it something gone wrong, an illness to be treated? These questions, though off the topic of genetics, are extremely interesting and contentious — and can result directly from questions of genetics and genetic testing.
Ana, you say that you would want to know as knowing would give you time to learn about your future condition and prepare for it. I feel the same way, were I in that position. I also think that, hypothetically, parents should be allowed to test their fetus for genetic conditions – so they too can know and prepare for that future. However, I imagine that you wouldn’t agree with that argument, as most disability advocates are against prenatal genetic screening.
So, to know – or not to know?
June 12, 2007 at 3:43 pm
My sister and I found out that we have the BRCA 1 or 2 gene. I am pleased we checked as now one can keep a close eye on it and my sister (I am male) can opt for surgery if she wishes.