Cracking Open Genetic Privacy: Common Good Is Best Served by Not Building Walls Around This Deeply Personal Information

摘要

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 mein 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? 1 shredded the invitation.