When you think about the people who have made a lasting mark on our understanding of medical science, you probably think about celebrated scientific heroes like Jonas Salk, Thomas Hunt Morgan, Linus Pauling, Watson and Crick. I would like to encourage you to reserve a special place in that list for a poor tobacco farmer from Virginia named Henrietta Lacks. Mrs Lacks was being treated for cervical cancer at Johns Hopkins when samples of her tumor and normal cells were removed from her body without her consent. Those cell lines, which have important biological properties that allow them to be kept alive and replicated, have been propagated down to the present day, and have played an instrumental part in many medical breakthroughs of the past six decades — including the discovery of the Polio vaccine by Jonas Salk.

The journey of the so-called HeLa cell line, as detailed in Rebecca Skloot’s remarkable book The Immortal Life of Henrietta Lacks, has proceeded entirely without consent — not from Henrietta Lacks herself, nor from her descendants who, arguably, own her genetic heritage just as much as Mrs Lacks herself. In the meantime, the HeLa cell line has formed the basis for countless scientific and commercial projects. The USPTO has registered around 11,000 patents that depend on the HeLa line in some way. Henrietta Lacks’s family only found out about this massive market when researchers began to contact them to ask about acquiring their genetic samples.

With the publication of Ms Skloot’s book in 2010 and the widespread attention that it has brought to this issue, you might imagine that researchers would be particularly sensitive when handling HeLa cells and its derivatives. But this appears not to be the case. Recently, researchers from the European Molecular Biology Laboratory published, for the first time, a high-resolution version of Henrietta Lacks’s genome. Without consent.

Rebecca Skloot describes the case in a recent opinion piece in the New York Times. Many in the scientific community justify this publication with ends-justify-the-means arguments, but it raises serious policy questions around subject privacy that are being completely ignored. For example, how much (very private) information can you learn about Henrietta Lacks’s children and grandchildren based on her genome? A lot. So much, in fact, that a relative’s DNA can be used in criminal forensics. The damage to Mrs Lacks herself is done, but the threats to the privacy of her descendants continues.

The EMBL claimed that it was publishing innocuous information that could not possibly violate the privacy of Mrs Lacks’s descendants. However, quoting from Ms Skloot’s piece:

But that’s not true. And a few scientists decided to prove it. One uploaded HeLa’s genome to a public Web site called SNPedia, a Wikipedia-like site for translating genetic information. Minutes later, it produced a report full of personal information about Henrietta Lacks, and her family. (The scientist kept that report confidential, sharing it only with me.)

The Lacks family was not happy. Once they contacted the EMBL and registered their dissatisfaction, the EMBL apologized and took the data offline. After it had been downloaded at least 15 times. Given the immense importance of the HeLa cell line in medical research, you can form your own conclusion as to how private that genome will remain.

Since the HeLa genome was published, there has been a broad spectrum of reactions, ranging from dismissing the Lacks family’s privacy concerns altogether to incredulity that it happened this way at all. The ethical and policy debates will continue, but I will leave you with the following, again from Rebecca Skloot:

In the three years since my book about HeLa was published, the Lacks family and I have spoken to audiences by the thousands about these issues. Public response is overwhelmingly consistent and in line with several studies: the public supports the science and wants to help it move forward. But that support is dependent on consent and trust.

I invite you to learn more about our efforts to strike a balance between open access and privacy for genomic data.

Additional Links

The Henrietta Lacks Genome: Consent, Trust, and Common Decency

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