I am an altruist by nature, so when a letter from my healthcare provider inquired as to my interest in volunteering for a research project my initial thought was, “Why not?”
I had participated in clinical trials before—no worries. What did they want? My spit. Why? To sequence my DNA and search for associations between my particular genetic alphabet and my health and lifestyle.
Important questions began to formulate in my mind. For instance, despite assurances to the contrary, could my genes haunt me in the form of higher life- or health-insurance premiums or could I slip into the ranks of the uninsured? Since my employer pays for my health plan, what right would human resources have to my genetic profile? And, perhaps my biggest worry: would data about “what makes me me” be vulnerable to hackers, creating the possibility of molecular identify theft? I shredded the invitation.
Did I make a wise decision or did I fall prey to some irrational fear of losing my identity, my privacy? And, would my loss of genetic privacy necessarily have had undesirable or harmful consequences?
Almost a decade after the Human Genome Project cracked the genetic code, the wall of privacy surrounding genetic information may be developing a few cracks of its own. This is not such a bad thing, perhaps, as it forces us to confront important questions about what constitutes privacy, its value, and whether robust protection of genetic privacy is a promise that cannot—maybe ought not—be kept. Traditional notions of the privacy of medical information are profoundly challenged by genetic tests that reveal things not only about individuals but also about families, something that a family member may or may not already know.
Privacy—the expectation that access to certain information is limited—appears to be ethically neutral, merely describing a person’s anticipated ability to control access to personal information. When I affix my signature to a document, knowingly giving my employer access to my medical records, there is no ethical breach.
Privacy gains ethical valence when expectations of control and limits are violated. Even a deeper ethical violation occurs when bootlegged information is used in harmful ways. Concern for this latter abuse powered the passage of the Genetic Information Nondiscrimination Act of 2008 (GINA), which takes full effect in May of this year.