[This is the first in my two-part look at philosophical implications of genetic testing. I will post Part Two next Sunday.]
To whom does your DNA belong? Is it just you? Or does your DNA also belong to your family given that much of your DNA is shared with family members? Would this even be a question if the DNA testing of some individuals was not being used to identify other individuals? Should violating someone's privacy, in this case by potentially revealing that person's genetic profile, require the other person's permission?
As "Jennifer King, the director of consumer privacy at Stanford Law School’s Center for Internet and Society, [notes] 'When you make this individual choice to upload a genetic sample to a site, you’ve brought along everybody you’re directly related to, as well as potentially your current or future children and grandchildren, and presumably you have not asked any of those people for their consent.' ... A study published in the journal Science last year looked at one such free database, GEDMatch, which contains the profiles of 0.5% of the U.S. population, and found that it could be used to identify 60% of Americans of European descent. With 2% of the U.S. population, this figure would increase to more than 90%, the researchers found. ...
Owned by a Chinese holding company, the for-profit Genomics Medicine Ireland Ltd. announced last November that it planned to build a database of 400,000 participants in Ireland, about 6% of the island’s population. Because the Irish are more closely related to each other than are other European populations, such a database would contain information about a huge proportion of the Irish citizenry. But it doesn’t stop there. From the middle of the 19th century up through the 1980s, Ireland experienced a massive emigration of its population. Ireland’s emigrants and their descendants are thought to number some 70 million. 'Because the diaspora is so large, you can then make some fairly educated guesses on an international level,' says Róisín Costello, a privacy researcher at the Long Room Hub Arts & Humanities Research Institute at Trinity College in Dublin. 'That’s obviously extremely concerning.' Like Dr. King, Ms. Costello suggests that the way we tend to frame privacy as an individual right, one that each customer can negotiate on their own with a corporation, has the potential to erode the greater good."
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