We read with great interest Ms. Harmon's Week In Review article about informed consent relating to DNA samples. One issue that the article hinted at, but did not directly address, was how technology has changed the game. Because of the rapid pace of DNA sequencing, it is now possible to read the entire genome of the individual from which a biological sample was taken. While a given sample may end up being used for a limitless number of different disease correlations and studies, this valuable information remains highly personal in nature: each unique sample from say, a diabetic patient, is fundamentally from -- and can be traced back to via the deciphered genetic sequence -- a unique individual. It can never be completely anonymized. This reality necessitates that we fundamentally rethink the entire issue of informed consent.
Dov Greenbaum, JD PhD
Mark Gerstein, PhD
Letter to the Editor in response to
Amy Harmon's "‘Informed Consent’ and the Ethics of DNA Research"
NY Times, 4/25/2010
Where’d You Go With My DNA?