Reuters Next — For Henrietta Lacks’ famous cells, new and unique protection
http://preview.reuters.com/2013/8/7/for-henrietta-lacks-famous-cells-new-and-unique-1
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The decision applies only to researchers funded by NIH, which said it “encourages” other scientists to abide by the agreement. Because DNA-sequencing technology is cheap and ubiquitous in genetics labs, the HeLa genome has been partly sequenced many times, and can easily be fully sequenced again.
“Sequencing” refers to determining the precise order of the chemical letters on a person’s genome, which is the full library of his or her genetic information. Bits and pieces of that sequence spell out, for instance, whether someone is at risk of diabetes or Alzheimer’s or other genetic traits, as well as personal traits like the consistency of ear wax.
These loopholes in the access agreement significantly weaken the NIH move, said Mark Gerstein, a computational biologist at Yale University who has raised concerns about threats to genetic privacy. “I doubt NIH will get blanket agreement from scientists in every country” to follow its protocol, “so it’s not clear what the agreement will be able to accomplish.”
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