Finished this one yesterday and had to organizing my thoughts around it. It’s about a black woman from a small town in Virginia (now unincorporated) who died of cancer in the fifties. Samples of her tumor were taken and the cells continued to multiply in the lab indefinitely (usually cell samples loose vitality after a certain number of divisions have occurred). This was a huge thing for not only cancer research- enabling studies that had been difficult before- but also, it turns out, a mind-boggling amount of other types of research. Henrietta’s cells became known as the HeLa cell line, and were involved in eradicating polio, mapping genes, testing effects of radiation, developing an HPV vaccine and much more. The doctor and researchers who first took and grew the cells in culture gave them away freely to any other researcher who wanted them- free dissemination of knowledge and materials helped science expand. But since then, the cell line has been produced in labs and sold to researchers in staggering quantities as a medical industry.
During all this time, Henrietta’s family knew nothing about what happened to their mother’s cancer cells. Some of them barely knew what a cell was. It was twenty years after her death when they first heard that not only had a sample been taken of her tumor, but that it had been so widely used in medical research, with some huge profits (for some). Meanwhile her family and descendants couldn’t even afford doctor visits. The author worked very hard to meet the family, hear their story, and educate them on what had happened. She took Henrietta’s daughter -who had no memory of her own mother- with her on reporting trips to find out what had happened to her sister, Henrietta’s oldest daughter who had been sent to an institution at a young age, for example. To the labs in John Hopkins where she saw her mother’s living cells in a vial and under the microscope lens. They read articles that had been written about her mother’s cancer cells, and found original medical records that finally revealed to the family how Henrietta had been treated during her cancer treatment (she suffered a lot). Needless to say, although it provided a lot of closure and answered tons of questions the daughter and other family members had about their mother’s life, it also caused them much pain to learn some things.
This book is so full. It’s about Henrietta’s life, and the lives of other poor black people in the forties and fifties, how deplorably they were sometimes treated by the medical community (often viewed as free research subjects). It’s about how the family is doing fifty years later, their strengths and their struggles. It’s about the efforts the author had to make to learn all that was put into this book, the personal journey and discoveries. It’s about how medical research works, pointing out quite clearly that tissue samples are still taken from patients on a regular basis, often without their knowledge or consent, building an immense database of material for researchers to work with. And how it could all fall apart if suddenly the research community had to throw those samples away, or had a dearth of material if people were given the right to refuse their tissues being kept and used in that way. This hit home for me, because not so long ago one of my children was participating in an outpatient program via a hospital. Part of the consent form includes this:
Use of Biological Samples. During your care at the facility, biological samples . . . might be collected from you for the purposes of your care. Sometimes, after your visit there might be excess or leftover biological samples no longer needed for your care. These samples are usually discarded. However, sometimes these samples might be used for research within our hospitals and occasionally made available to researchers. . . The research can help answer questions about the causes of diseases, how to prevent them, or even how to treat them. Please note that for this kind of research, (i) there might be no practical way to inform you about the details or results of the research…. (ii) generally, no results on tests performed on your samples during the research can be returned to you or entered into your health record. (iii) it is not likely that you will directly benefit from the research, and (iv) there are no plans to compensate or recognize you for use of your samples or any discoveries made during the research. When these samples are used in this manner, your privacy is safeguarded consistent with applicable federal and state privacy laws.
So I knew this, and I was okay with it, because what else am I going to do, refuse treatment? The huge thing here is, back when a sample was taken from Henrietta Lacks, there were no laws in place protecting her privacy- the samples were marked with an abbreviation of her name, and eventually someone leaked the name to a journalist. The terrible thing is the manner in which the family found out- it was literally a shock to them- and then there’s the great disparity between how much money was generated by growth and sales of the HeLa cells, and the poverty Henrietta’s family continued to live in. To many people, this doesn’t seem right. I feel like a lot of these things never should have happened, but then what about all the great strides science made thanks to those very cells. When Henrietta’s daughter and other family members realized what it meant, how greatly those immortal cancer cells had contributed to science, they were rightfully proud.
I could say so much more, but really you should read the book. Highly recommended.
I do think there's a difference among races when it comes to how doctors use our bodies. I've actually been thinking about it a lot this month because I read this book Lakewood that was a creepy satire about medical exploitation of Black bodies, and then I have also been reading A Black Women's History of the United States, which is excellent and gets briefly into the same topic. Fannie Lou Hamer was sterilized without her consent, apparently!!! I knew that was a thing that happened to Black and disabled women, but I didn't know it had happened to Fannie Lou Hamer.All to say, the money is what really shakes me up. I think there should be a system in place to at least offer to compensate people if their biological samples are used, and/or you should be able to opt out of that part of the consent forms.
Exactly. The part in this book that mentions researchers basically using black patients in poor hospital wards as experimental subjects is just appalling. Deliberately injecting them with disease, then letting them die of it, so they could study how it progressed. It was bad enough that apparently rumors went through black communities around Baltimore- fears of being snatched off the street or even exhumed from graves, to be used in research. All the stuff about samples, consent and compensation seems a very sticky problem, the more you look into it. The author explains in the afterword here, how complicated it is for medical research to deal with that. It would be resetting the whole system. Makes me think, kind of how we've never gone from our ridiculous pounds and inches system to using metrics, which make so much more sense, because it would just affect everything and be so overwhelming to change it all.
Great review, Jeane. I've been meaning to read this one for years but have still not gotten around to it. Now does seem like the perfect time for me to get a copy, so I appreciate you bringing it back to my attention.I have mixed emotions about what was done in this particular case. The way it was handled was insensitive and, perhaps, exploitive of a person and family not equipped to deal with it. But so much good came from the research that it is good to see the woman and her family having their story told to the world. Research ethics have come a long way in the last few decades, but there is still a long way to go. What was done to minority patients just a few decades was outrageous and should have never been allowed to happen. I recall stories of how our military was used in the same manner sometimes – probably again with an emphasis on minority soldiers.
Thanks, Sam. Yes. When I told my husband some of the things I read in this book, he immediately brought up how soldiers had been given things without their knowledge or consent- and so many of them still live with consequences of that years later. It's deplorable, in my opinion.It's a great book. I'd really like to see what you think, when you read it.
Thank you for your great review, Jeane. I have had a copy of this one on my TBR shelf for years now, but haven't picked it up. I really feel for her and her family and what they had to go through. I am glad they are finally getting the recogition they should have gotten long ago.