A couple of years ago, when Rebecca Skloot published a book about the fascinating story of Henrietta Lacks, her cervical cancer and what researchers did with it, news articles raised questions about the privacy of a person’s medical data and what rights a person has to their own tissue. Now, Skloot updates the story in an opinion column for the New York Times — and, now, there are even more genetic privacy questions:
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. Because I wrote a book about Henrietta Lacks and her family, my in-box exploded when news of the genome broke. People wanted to know: did scientists get the family’s permission to publish her genetic information? The answer is no. […]
Now imagine they posted your genetic information online, with your name on it. Some people may not mind. But I assure you, many do: genetic information can be stigmatizing, and while it’s illegal for employers or health insurance providers to discriminate based on that information, this is not true for life insurance, disability coverage or long-term care. […]
No one knows what we may someday learn about Lacks’s great-grandchildren from her genome, but we know this: the view we have today of genomes is like a world map, but Google Street View is coming very soon. […]
As Francis S. Collins, director of the National Institutes of Health, says: “This latest HeLa situation really shows us that our policy is lagging years and maybe decades behind the science. It’s time to catch up.” […]
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. Yet researchers aren’t required to tell you that there is no guarantee that a genome, once sequenced, will stay private or anonymous. […]
After hearing from the Lacks family, the European team apologized, revised the news release and quietly took the data off-line. (At least 15 people had already downloaded it.) They also pointed to other databases that had published portions of Henrietta Lacks’s genetic data (also without consent). They hope to talk with the Lacks family to determine how to handle the HeLa genome while working toward creating international standards for handling these issues.
The publication of the HeLa genome without consent isn’t an example of a few researchers making a mistake. The whole system allowed it.