Wednesday, March 27

The cells of a woman who died in 1951 are being used for ongoing medical research, and are at the forefront of a debate on genetic research and privacy

"LAST week, scientists sequenced the genome of cells taken without consent from a woman named Henrietta Lacks. She was a black tobacco farmer and mother of five, and though she died in 1951, her cells, code-named HeLa, live on. They were used to help develop our most important vaccines and cancer medications, in vitro fertilization, gene mapping, cloning. Now they may finally help create laws to protect her family’s privacy — and yours.
"The family has been through a lot with HeLa: they didn’t learn of the cells until 20 years after Lacks’s death, when scientists began using her children in research without their knowledge. Later their medical records were released to the press and published without consent." ...
"The problem, says Yaniv Erlich, a fellow at the Whitehead Institute for Biomedical Research, is that anonymity vanishes when it comes to DNA: 'People don't realize it's impossible to hide genetic information once it's out there.' He and his colleagues recently proved that it's possible to use online public databases to find the identities of people whose anonymous DNA samples had been sequenced and published online." ...
"The Lackses' experiences over the last 60 years foretold nearly every major ethical issue raised by research on human tissues and genetic material. Now they're raising a new round of ethical questions for science: though their consent is not (yet) required for publishing private genetic information from HeLa, should it be? Should we require consent before anyone's genome is sequenced and published? And what control should gene-sharing family members have?"
The Immortal Life of Henrietta Lacks, the Sequel (NYT)

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