Rebecca Skloot & the Lacks Family on Communication in Science and Medicine

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By Rebecca Irons

Rebecca Skloot’s 2010 book “The Immortal Life of Henrietta Lacks” is one that many of us may be familiar with. An exploration of the human story behind the HeLa cells, the book deals with more than simply an historical account of biomedical research; it is essentially a book about race, bioethics, and the medical industry at large.

At a recent Medical-Humanities conference held at Stanford University, Skloot and two members of the Lacks family—Jeri Lacks-Whye and Alfred Carter Jr, (who are both Henrietta’s grandchildren)—were the invited guest speakers for the opening event. A most enjoyable discussion followed, with some very poignant points raised about the relationship between medicine and patients, and some conclusions about outreach and communicating scientific knowledge that I believe can and potentially should be applied to anthropology also.

Irons powerpoint
An evening with Rebecca Skloot and the Lacks

For those who are unfamiliar with this book and its contents, Henrietta Lacks, a poor black woman from Virginia, was admitted as a cervical cancer patient to Johns Hopkins Hospital in 1951. A sample of her cells were taken to study without her knowledge or consent during her internment. She died of her cancer that year, and the lives of her family continued on unaware of the impending journey that her cells would then take.

As it so happens, the cancer cells taken from Henrietta, the HeLa cells (named from her initials) were unlike others that had previously been seen in medical research. They multiplied at a high rate and could stay alive in test tubes longer than other cells had. This led to their being gifted away for free to other researchers throughout the United States, and then, throughout the world. The HeLa cells have been used in labs ever since, and have contributed towards the development of the polio vaccination, cancer treatments and understandings of HIV/AIDS, to name just a few important uses.

However, whilst all of this went on, the Lacks family had no idea that Henrietta’s cells were being used for these purposes. They had been contacted years ago by medical researchers to take blood samples for the purpose of more research, and they had been under the mistaken impression that those doctors were testing for cancer. And it is around this point that the evening’s discussion circled; the lack of understandable com

Irons Stanford
Stanford University was the setting for the 2018 Medical Humanities Consortium Conference

munication between medical professionals and lay-persons, and the problem of speaking ‘science’. As an example, Skloot described how when the family had been told that the hospital ‘had Henrietta’s living cells’, the only point of reference that they had to ‘cells’ was to prison cells, and began to question if the hospital had Henrietta alive somewhere in a jail. The hospital was speaking ‘science’, which most lay-people cannot understand, and Skloot and the Lacks family are advocating for more easily-understandable medical-speak so that patients are not shut out of conversations about themselves.

As they delivered this message to a room of medical students and academics, I couldn’t help but wonder how this could apply to us as medical anthropologists too. Communicating research in non-academic environments is so important to disseminate our work, and essentially, to have wider impact beyond academia.

 

On this, Skloot and the Lacks recommend practice; practice talking to non-academics about your work, and if you lose someone along the way, go back and work out at which point you started speaking ‘science’, then remedy that. Whilst our research may not attract the same attention as Skloot’s account of the Lack’s story (which now includes a HBO-film with Oprah Winfrey and multiple foundations), important findings may struggle to be disseminated if they stay within the confines of the University in ‘science’ speak (or ‘anthropology’ speak- explaining ‘ontology’ is always a fun one for example), and so perhaps it is something worth working considering for students and academics alike.

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