Genetics and privacy

1 minute read

“Harvard prof Henry Louis Gates Jr. hunting for great-great grandfather”

CUMBERLAND, Md. -- Harvard University Professor Henry Louis "Skip" Gates Jr. is asking all residents of Allegany County, Maryland, who are of Irish descent to get their DNA tested to help solve a 150-year-old family mystery -- who is Gates great-great grandfather?

I admire the way Henry Louis Gates has rolled with the punches as genealogical data from genetics have changed over the years. In 2006, I wrote in Slate about the limits of DNA ancestry testing, using Gates as an example of how tests before that time could mislead (“How African are you?”). He has made the complexity of interpreting these genealogy assessments into a successful series of television specials, and has probably done more to popularize DNA-assisted genealogy than anyone else in the United States.

I thought of this story when Razib blogged today about “red tape” as a barrier to genetic testing for the purposes of health research (“American medicine & American red-tape”).

People are suffering from terminal illnesses, and considerations of the genetic privacy of their near relatives are looming large? Seriously? The reality is that manifestation of a disease itself gives one information about the risks of their relatives.

The reality of genetics today: A Harvard professor is collecting the DNA of all Irish-descent males in Allegany County, Maryland, for the purposes of finding a man who lived in 1820. And many of them are willingly cooperating.

“Privacy advocates” seem like they’re living in the 1980’s. Of course, when you end up dealing with Congress, the FDA, or other branches of government, living in the 80’s is the expected norm.