Ethics row over publishing DNA of unwitting heroine festers

The Observer

The astonishing story of Henrietta Lacks, who died of cancer in 1951 but whose still living cells are now the basis for much medical research, has captivated the U.S. for the past two years — and there is no sign of the debate, or its controversies, abating.

As revealed in the bestselling 2011 book “The Immortal Life of Henrietta Lacks,” this is a tale of a poor black tobacco farmer who never consented to having her tissues taken but whose cancer cells have proved so important they have formed the foundation for work leading to two Nobel prizes.

Yet Lacks’ family never knew about it — even as the cells were used around the world in research, or when they themselves were asked for blood samples two decades later. The book described the indignity of the family’s ordeal even as giant corporations profited hugely from Lacks’ cells, known as HeLa in medical parlance.

Her children, again without their knowledge, had their medical records studied and even published. It was a story of the complex intersection of medicine, race and profit that seemed to have a happy ending as the book, written by Rebecca Skloot, became a best-seller and Lacks’ contribution to medical science was recognized.

But now history seems to have repeated itself. A group of scientists at the European Molecular Biology Laboratory (EMBL) in Heidelberg recently published a paper in which they sequenced the entire genome of a HeLa cell — essentially putting Lacks’ DNA sequence up on the Internet for all to see. Amazingly, they failed to alert anyone in the Lacks family about their intentions or ask their permission.

Skloot was outraged, arguing that scientists appeared to have learned little. “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,” she wrote in a column in The New York Times.

David Kroll, a board member of the Henrietta Lacks Foundation, was furious that Lacks and her family had again apparently fallen into a scientific ethics blind spot. “I was pretty appalled. I could not believe this was happening all over again,” he said.

The impact was rapid. Though the scientists at EMBL had insisted that the genome could not be used to make any sensitive medical conclusions about Lacks or her living family members — such as whether they had a predisposition to certain diseases — one researcher told Skloot they had done precisely that by downloading the genome and provided proof of their deductions confidentially to the writer. Eventually the EMBL revised its publication, removing full details of the genome, and apologized.

The incident has added an unexpected last chapter to what was already a remarkable story. Lacks died quickly, aged 31, after being diagnosed with cervical cancer. The cells taken from her have been used in experiments all over the world and even in space.

HeLa cells have helped make hundred of millions of profits for companies all over the world and been used for medical breakthrough after breakthrough. They have been used to develop the polio vaccine, in vitro fertilization and even cloning.

Yet before Skloot’s book was published, her story was little known. Now, not only is Lacks honored — she has had a school named after her — but her case is held up as a prime example of the abuse of medical ethics where getting consent from test subjects is now seen as a primary moral duty. “The scientific community can still be arrogant and have a disregard for people’s feelings,” Kroll said.

That seems to be particularly true of this latest incident involving the publication of the genome of the HeLa cells. As genetic technology and medicine becomes more common it is going to raise key issues of privacy. The human genome is becoming easier and cheaper to map in its entirety and the sort of breaches that just took place with the HeLa cell line are likely to become more frequent. That could open up many people to unscrupulous employers or health insurance companies trying to analyze DNA sequences for confidential information.