Who controls the information about your genes?

The Immortal Life of Henrietta Lacks, the Sequel by Rebecca Skloot

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.

Skloot's book, The Immortal Life of Henrietta Lacks, details the various ways science, in its press to go forward, did so with certain degree of ignorance and disregard for the people who were genetically connected to the most successful cell line in history. The HeLa line saved millions (among so many other things, it was used to develop the polio vaccine), but science never seems to be able to get it right when dealing with the family Henrietta Lacks left behind. Now they've stumbled yet again. At least the team did apologise when they heard of the family's reaction, and took down the data they'd made public, but of course that's like shutting the barn door after the horses have escaped, as it was downloaded and most likely deseminated.

In the United States there are laws that protect seemingly every bit of medical privacy, laws that weren't extant when Lacks lived and died. But laws related to research are still a bit murky. Can someone take tissue or samples from you, remove direct connexion to your name and then publish your genome or use your cells in research without your consent, patenting the result, reaping billions? Science is moving fast, and our legal and ethics system isn't necessarily moving fast enough. Even with consent, most people don't realise what they're signing; they don't understand the legalese or the medicalese, not because of stupidity, but because it's complex and they're untrained in it. So ethics would suggest that we protect those who don't have the knowledge to truly make informed consent by at the very least requiring it be said in simple terms, and, respecting the wishes of those who would rather not participate. Personally I think it's rather wrong to profit from a person's material without compensation or knowledge, unless expressly donated. I recognise the cells are doing nothing sitting in a tube without the scientific manipulation and development, but at the same time, the person or heirs should at least share in the ownership of the cells, which came from his or her body. Would that cripple scientific research? Probably not.