HeLa update

As of today, Henrieta Lacks’ family has agreed to have the HeLa genome published under a restricted access model (similar to the one used, for example, by dbGaP). You can read about the negotiations in Nature, where the genome paper itself is also published. I was impressed with the fact that Francis Collins talked to the family directly, took the time to explain the science, and gave them a choice on whether the data should be published or not. I hope it sets a precedent for more consent-aware science practice generally.


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