Rebecca Zaritsky, The Georgetown Voice; Open Access: On Learning I Won’t Die Of My Grandmother’s Disease
[Kip Currier: This past week's Information Ethics course module explored and reflected on the pluses and minuses of DNA testing. This article is a thought-provoking first-person account of one person's 23andMe DNA test results.
The author raises some positive aspects of genetic testing, as well as some potential downsides. She offers a "go-between" strategy for mitigating those possible impacts, concluding that "It’s not fair to the patients to expose them to information without an explanation."
Lots of practical challenges and legal and ethical questions are raised by the writer's suggested remedy though, regarding who, when, and how someone would make the grey decisions about what constitutes "serious medical information that affects the individual’s life" and what constitutes "non-medical or “trivia” information". Who would bear responsibility for making these "tough calls"? Who or what entities would be charged with oversight and enforcement?
No easy answers. But the author raises important questions for law- and policymakers, ethicists, and consumers about the implications of this increasingly touted technology and information tool.]
"The results were, generally speaking, good news. A gene for hypertension doesn’t scare me, and if I die of heart disease, at least I’ll still die as me. I was excited, intrigued, and overall relaxed by what I found. In hindsight, I’m only sorry I waited so long.
Still, what if that hadn’t been my experience? What if I did have copies of APOE4, or a mutation in a familial Alzheimer’s gene, or another disorder that nothing could be done about? I could have found out some serious, life-changing information for only $10 and a couple of clicks. Would I have been able to deal with that? I can’t say for certain. Not everyone who does these tests will have the same outcome as I will, and some will undoubtedly find information they weren’t prepared for and didn’t want. If I found out I had a mutation in BRCA, a gene conferring a high-risk for breast cancer, would I have spent my whole life worrying?
More commonly, there’s the potential for misinterpretation."
