The Dawn of Genome Trolling

Putting genome data into the public domain advances science, but nearly all of it can be linked to someone.

a.k.a. HeLa: Henrietta Lackss cells became a staple of biomedical research.

Last week European scientists were shamed into cutting off public access to a genome sequence. As far as I know, its the first instance of a genome pulled from the public record.

Its also a bad precedent.

The case involves a line of cervical cancer cells, known as HeLa. As told in the book The Immortal Life of Henrietta Lacks, a bestseller by reporter Rebecca Skloot, the HeLa cell line came from the body of Henrietta Lacks, a poor African-American tobacco farmer. The cells were collected without Lackss knowledge, and later researchers did even more dodgy research involving her children.

Lacks died of her cancer in 1951, but HeLa went on to become a big deal in science. In fact, it is the most widely used model cell line for studying human biology. Thats according to some German researchers who, on March 11, decided to expand that knowledge by publishing the HeLa genome.

The publication set off a tizzy of criticism online, tracked here by researcher Jonathan Eisen. Although no law required the Germans to ask permission from Lackss family, it seemed in very poor taste not to have done so, especially given the notoriety of the case. Eventually Skloot, whose book is being made into a movie by Oprah Winfrey and HBO, got involved. She briefed the Lacks family and conveyed their concerns to the scientists, who then agreed to put a block on the data.

In her write-up of the episode for the New York Times, Skloot quotes one of Lackss granddaughters, Jeri Lacks-Whye, as telling her: That is private family information It shouldnt have been published without our consent.

Private information? Whatever the past injustices the Lackses have suffered, thats just entirely wrong. There is no law here or in Germany (that I know of) that lets anyone put a claim on the DNA information of another person.

Even what right you have to your own DNA information isnt settled. Some states have sought to pass laws that attempt to define DNA as personal property. That way, no one could surreptitiously collect yours and publish it. Eric Topol, a doctor at the Scripps Institute, tweeted at me to say, Individuals should own their own DNA data!

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The Dawn of Genome Trolling