I enjoyed the recent article describing the hidden value in biological specimens given to medical research. The article highlighted a conundrum, balancing the right of people to anything of value derived from their own tissue versus the importance of promoting research. One thing the article only alluded to was the additional complexities stemming from DNA sequencing. Sequencing the DNA of a specimen provides much information not only about the person from whom the specimen was taken but also about the parents and children of that individual. Thus, if people consent for their tissue specimens to be freely used for medical research, they are also implicitly consenting for genetic information to be revealed about their relatives. This is being given without the relatives having any direct role in the discussion. Moreover, what is possible in 2006 might be very different from what will be possible in 50 years when we might be able to glean a tremendous amount from a bit of genetic sequence -- e.g. precisely what diseases or behavior anomalies might befall someone.
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The author appears to have her own wikipedia entry!
http://www.nytimes.com/2006/04/16/magazine/16tissue.html
http://www.nasw.org/users/skloot/TakingTheLeast.pdf
"Taking the Least of You"
By REBECCA SKLOOT, NY Times, April 16, 2006
http://www.rebeccaskloot.com/
http://en.wikipedia.org/wiki/Rebecca_Skloot
The Tissue-Industrial Complex
Anna O'Connell couldn't find Ted. She stood bent at the waist on a frigid afternoon last December, her head and all its fuzzy red hair crammed into an old stand-up freezer that looked like something you get milk from at the corner store: tall, white with a bit of rust and a pull handle. That freezer is the first thing you see when you walk into the Fox Chase Cancer Center laboratory in Philadelphia, where O'Connell has spent decades as a staff scientist. She pushed aside vial after vial. "I know we still have him somewhere," she yelled, her head still inside the freezer. "We've got serum from, like, 450,000 people."....
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