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We are all Henrietta Lacks. Or, according to privacy experts, we soon could be. Americans are giving their DNA to companies that research their family origins, scientists say, without thinking through the potential long-term consequences.
This week, the National Institutes of Health said it reached a landmark agreement to protect the privacy of the family of Henrietta Lacks, who died in 1951. Since her death, Lacks’s cancer cells and DNA have been used as the basis for as many as 74,000 scientific papers. For decades, the Lacks family had no idea her cells were being used in experiments around the world. Since finding out, they’ve expressed concern about what Lacks’s genes could reveal about her extended family. The new agreement acknowledges Lacks as the source of the “HeLa” cells, and restricts public access to her — and, by extension, her family’s — genetic information.
Her case provides a cautionary tale for those who willingly give up their DNA for genealogy tests, lawyers say. (Lacks’s tumor cells were taken without her permission, before federal regulations required patient consent.) With TV shows...
This week, the National Institutes of Health said it reached a landmark agreement to protect the privacy of the family of Henrietta Lacks, who died in 1951. Since her death, Lacks’s cancer cells and DNA have been used as the basis for as many as 74,000 scientific papers. For decades, the Lacks family had no idea her cells were being used in experiments around the world. Since finding out, they’ve expressed concern about what Lacks’s genes could reveal about her extended family. The new agreement acknowledges Lacks as the source of the “HeLa” cells, and restricts public access to her — and, by extension, her family’s — genetic information.
Her case provides a cautionary tale for those who willingly give up their DNA for genealogy tests, lawyers say. (Lacks’s tumor cells were taken without her permission, before federal regulations required patient consent.) With TV shows...