Reuters Next — For Henrietta Lacks’ famous cells, new and unique protection

August 9, 2013

http://preview.reuters.com/2013/8/7/for-henrietta-lacks-famous-cells-new-and-unique-1

http://www.reuters.com/article/2013/08/07/us-science-hela-idUSBRE9760YD20130807

QT:"

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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