Who Owns Your Genome?

The sequence of your genome contains lots of information about you. It also contains lots of information about your parents, your siblings, and your children. That's why you should not make your genome sequence public without obtaining their permission.

The sequence of Henrietta Lacks' genome was just published (HeLa cells) and nobody bothered to seek permission from her survivors. Jonathan Eisen has a comment and he has also collected all the information on the internet [HeLa genome sequenced w/o obtaining permission/consent from family - some comments and background]. Be sure to read the New York Times article by Rebecca Skloot: The Immortal Life of Henrietta Lacks, the Sequel. She says,

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.

In my opinion, there is no excuse for publishing this genome sequence without consent.

Razib Khan disagrees. He thinks that he can publish his genome sequence without obtaining consent from anyone else and I assume he feels the same way about the sequence of the HeLa genome [Henrietta Lacks’ genome, and familial consent].

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