The Immortal Life of Henrietta Lacks, the Sequel – NYTimes.com
Some quotes that I thought interesting:
“That is private family information,” said Jeri Lacks-Whye, Lacks’s granddaughter. “It shouldn’t have been published without our consent.” 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. 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”).
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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.
http://www.nytimes.com/2013/03/24/opinion/sunday/the-immortal-life-of-henrietta-lacks-the-sequel.html?pagewanted=all&pagewanted=print http://www.g3journal.org/content/early/2013/03/11/g3.113.005777.abstract