I am on holiday, and this is the only time in the year I can afford enough neurones to reads some serious books. This year I picked "The Immortal Life of Henrietta Lacks", by Rebecca Skloot.
This 2009 book tells the story of the HeLa cells line, the first immortalised cell line ever produced. But it also tells the story of Henrietta Lacks, the black woman that in 1951 went for a visit at the Johns Hopkins Medical School and Hospital in Baltimore, and was found with an incredibly malignant tumour of the cervix. Without her knowledge or consent, a part of the tumour was sent to George Gey, a cell biologist working in the same hospital, who derived from it the first human cell line that would replicate indefinitely, what is usually referred as an "immortal" cell line. The line was named with the initial of the donor, HeLa. To date PubMed reports 94,103 papers that cite the HeLa cell line; the list of discoveries that were made possible because of the HeLa cell line is impressive, starting from the key role it played in the discovery of the polio vaccine.
First, if you have any interest in life sciences, or in the ethics of research, please read this book. The author develop a passionate parallel narrative of the HeLa cell line and of Mrs Lacks and her family; in doing this you realise what we all know and all constantly forget: there are people behind our samples, our diseases, our cures. People with their beliefs, with their fears, they joys and pains, their greed and generosity, and their vision of the world.
I decided to write this blog to fix some ideas that I developed while reading this book.
The first theme is racism. While George Gey is described by the author as good person, driven by a positive ethics of research, the United States of the '50s are a profoundly racist country, where black people are perceived as lesser humans. And once you accept this, even unconsciously, then even the good persons will end up acting with total disrespect for the fundamental rights of other human beens.
the second theme is the need for a rigorous enforcement of ethics in human and animal research. Reading this book I learnt of the Tuskegee syphilis experiment, or the work of Chester M. Southam who injected HeLa cancerous cells under the skin of prison inmates from the Ohio State Penitentiary and to cancer patients without their consent. I came to realise that for each rule we need to cope in biomedical research, there is in the past an horror story that motivated the introduction of that rule. It might be obvious, but like many things, we tend to overlook them, or at least I did. I think teaching applied research ethics starting form this historic cases can help our researchers in training to better understand where all this comes from, and why it is important.
As I found enlightening this book, I disagree with the proposals contained in its Afterward. Rebecca Skloot identifies two issues: the need for informed consent in tissue banking, and the unfair share of commercial profits built on someone tissue donations. While I agree both problems exist, the solutions the author propose (full informed consent and sharing of commercial profits with the donor) are so american in celebrating the supremacy of the individual over the collectivity.
While I agree that no tissue should be used for research without the donor consent, the need for the development of tissue banks prevents the detailed informed consent that is typically used in clinical research, because at the time of donation we do not know which exact type of research will be conducted on those tissues. I believe that we can develop informed consents that provide general authorisation to research, and possibly offer opt-out for particular type of research that are know to raise moral issues in groups of citizens (such as biological warfare).
Also, I think that profit sharing looks at the issue in the wrong way. Not only the donor, but also the researchers should be forbidden to make any profit out of tissue donations. The idea that one can patent a human gene is simply terrifying, and has already produced some horror stories in term of access to cure. George Gey gave away for free his HeLa cell line to anyone who asked for it, and did not even try to patent some of the technologies he developed to support mass-production. this idea that greed is a positive driver is crazy, and factually and historically wrong. We need to tell our patients, our researchers in training, our doctors that we do what we do for the betterment of humanity, not to become rich.