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
