On its own, the HeLa genome doesn’t say anything specific about Lacks: it’s a string of billions of letters that detail the genetic information that makes up a HeLa cell, which is useful for science. But over all, the scientific community was surprisingly silent on the issue. Several noted that consent wasn’t required to publish the HeLa genome (true). A few argued that the cells had changed so much over time, they couldn’t accurately tell us anything about Lacks (to which a geneticist replied, “Your claim is so wrong that I don’t know where to start”). Some scientists agree: Jonathan Eisen, a genomics researcher at the University of California, Davis, tweeted, “A bit stunned that the people publishing the HeLa genome appear to not have gotten consent from the family.” Another said this was going to further damage public trust in science. “It shouldn’t have been published without our consent.” “That is private family information,” said Jeri Lacks-Whye, Lacks’s granddaughter. 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. Now imagine they posted your genetic information online, with your name on it. That report would list the good news (you’ll probably live to be 100) and the not-so-good news (you’ll most likely develop Alzheimer’s, bipolar disorder and maybe alcoholism). Imagine if someone secretly sent samples of your DNA to one of many companies that promise to tell you what your genes say about you. People wanted to know: did scientists get the family’s permission to publish her genetic information? The answer is no. Because I wrote a book about Henrietta Lacks and her family, my in-box exploded when news of the genome broke. Later their medical records were released to the press and published without consent. 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. Now they may finally help create laws to protect her family’s privacy - and yours. They were used to help develop our most important vaccines and cancer medications, in vitro fertilization, gene mapping, cloning. She was a black tobacco farmer and mother of five, and though she died in 1951, her cells, code-named HeLa, live on. LAST week, scientists sequenced the genome of cells taken without consent from a woman named Henrietta Lacks.
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