Whitehead Fellow Yaniv Erlich weighs in on the release of HeLa cell genome

Rebecca Skloot, author of The Immortal Life of Henrietta Lacks, wrote a perspective for yesterday’s New York Times about the European Molecular Biology Laboratory’s (EMBL) recent publication of the sequence of the HeLa Cell genome. EMBL released the sequence without seeking consent from the Lacks family.

Skloot had multiple conversations last week with Whitehead Fellow Yaniv Erlich about the privacy implications posed by this release and includes comment from Erlich in the piece that appeared in the Sunday Review section.

Skloot writes:

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.

Read full piece on the NYTimes online