There are times when I wish I was still teaching so that I could share an extraordinary case with psychology students and enjoy their reactions as they are challenged to think. Over the decade that I spent teaching undergraduate and graduate students, I had a handful of books that I would use to introduce and put a human face on topics such as the scientific method or psychosurgery. If I was still teaching, I’d add Rebecca Skloot’s book, The Immortal Life of Henrietta Lacks, to my list.
If you’re interested in privacy, consent, and medical ethics, this book has it all – and more. Skloot documents what happened to cervical cancer cells taken from Lacks in the context of the times (1950s) and standards for privacy and consent in research. She also relates the growth of a profitable industry in providing cells to researchers. But beyond its historical value and context, Skloot brings us forward to still-murky questions of law and ethics as to what can be done now with tissue samples collected when doctors and researchers never sought nor obtained consent for use of a patient’s tissue samples – and what should be done going forward.
So as Henrietta Lacks’ cells live on, so do the ethical questions her case raises. The sad story of a young woman dying of an aggressive cancer in 1951 continues to pose thorny ethical questions as researchers recently published a genome based on the HeLa cell line without informing or educating her descendants and without obtaining their consent. The genome was removed from public availability and the NIH recently announced an agreement with the Lacks family as to how it would be made available for future researchers, but the fact is that the researchers probably didn’t need their consent even though publication of the genome might invade their privacy. The law has never been on Henrietta Lacks’ family’s side, which highlights the gap in our privacy and consent laws.
Perhaps one of the most disturbing aspects of the book was the impact on Henrietta’s surviving children and husband after they learned, decades later, what had happened to cells taken from their mother. Not sophisticated people with resources to research and understand what was going on, media reports on Henrietta’s cells and how they had been cloned and shared with researchers all over the world alternately exhilarated and frightened her surviving family members, some of whom believed that scientists were cloning their mother (and not just cells). And having learned that there was a huge commercial market for HeLa cells, they were angry and bitter that they did not benefit at all monetarily from non-consensual use of their mother’s tissue. Indeed, this financially impoverished family didn’t have sufficient insurance or healthcare to treat their own problems. While their mother’s cells made others rich, they derived no benefit. And when they were asked at various points to donate their own blood, it was not made clear to them that it was for the researchers’ benefit and not to advise them about their own health or risks. To say that they felt somewhat victimized would be an understatement. It’s also clear from Skloot’s interviews with family members over years that the whole situation and their lack of understanding as to what the cloning of cells really meant impaired at least some of them psychiatrically.
As a former researcher and academic, I grew up in a time when issues of consent were starting to take hold and institutional review boards were first being required. I carried those principles over into my clinical research when I left academia. The disorders I study tend to be genetically heritable, and Skloot’s book serves as incredibly powerful and painful reminder that when we study a patient and share what we learn, we run the risk of confusing or alarming their relatives – or invading their privacy. While de-identification might prevent some problems, in cases like HeLa, where the source of the cell line is publicly named and known, we need to think more broadly about the family’s privacy and not just the tissue donor’s privacy – even if the tissue donor consents.