Those who read (or who are familiar with) the book The Immortal Life of Henrietta Lacks will probably be interested in this article by the book’s author, Rebecca Skloot. In particular, Skloot addresses new ethical issues that have arisen with the recent publication of the HeLa genome without the consent of her family.

The publication of the HeLa genome without consent isn’t an example of a few researchers making a mistake. The whole system allowed it. Everyone involved followed standard practices. They presented their research at conferences and in a peer-reviewed journal. No one raised questions about consent.

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Matthew Eppinette, Director of Programs