David's First Book Review: The Immortal Life of Henrietta Lacks

I've discovered reading again.  Or maybe what I've done is made a conscious decision to set aside time to read.  Some books I've recently read have nothing to do with cancer, like Cloud Atlas.  Then there's The Immortal Life of Henrietta Lacks.

Rebecca Skloot did a marvelous job telling the story of Henrietta Lacks, a woman from Baltimore whose cervical cancer cells became the very first immortalized cell line.  I think this book is a "must read" for anyone engaged in cancer research, if for no other reason than it reminds us that every cell line we work with was once a tumor growing in an individual... a person who had a family and friends, a person who suffered and probably died of cancer.  Each of these people has a story, and knowing that story can inspire us to work harder to find better treatments with fewer side effects.

But aside from the human interest angle, the book is an interesting study in the evolution of medical ethics.  When Mrs. Lacks was treated, in 1951, there was nothing "unethical" about taking some of the cells that were removed from her during the course of her treatment and trying to grow them in the lab.  She did not give informed consent for her cells to be cultured, but the very concept was not a part of medical research at the time.

Times have changed.  Just last week I was getting informed consent from a woman one of whose children was going to donate bone marrow to another.  Our cancer center has a "leukemia bank," a freezer full of bone marrow removed from patients with leukemia, frozen away for future research.  As I explained to her, it can be hard to tell what is abnormal about the leukemia cells if we don't have normal cells to compare them to.  So we ask each normal bone marrow donor to allow us to freeze a teaspoon or so of marrow for comparison studies.  In order to do this, we have to get approval from an Institutional Review Board and the donor (or the donor's guardian, in the case of a minor) has to sign a statement asserting that he or she consents to having this normal marrow stored away.

And that is just to STORE the marrow.  If we want to use the marrow for research, we have to get approval from the Institutional Review Board for the research project and use the marrow anonymously.  If we need clinical information about the marrow donor (or the leukemia donor), we need to either track that person down and get informed consent for the specific experiment or we have to convince the Institutional Review Board that doing so would be an undue burden (if, for example, the patient has subsequently died or has left no contact information or the study will involved hundreds of samples and the data will be used anonymously).

None of these safeguards were in place in the 1950's.

Another fascinating question raised by Ms. Skloot is the question of intellectual property and a patient's rights to his or her own tumor.  Ms. Skloot contrasts Mrs. Lacks, whose family received nothing in exchange for her cells (although, to be fair, neither Johns Hopkins nor Dr. Gey, the man who cultured her cells, received any money for her cells, either.... they were distributed freely to any interested lab anywhere in the world), with Ted Slavin and John Moore.  Mr. Slavin was a man with hemophilia who sold his serum because it had extremely high levels of antibody against Hepatitis B and then supplied serum to Baruch Blumberg, a virologist who discovered the link between Hepatitis B and liver cancer and created the first vaccine against Hepatitis B.  Mr. Moore's spleen was removed as treatment for Hairy Cell Leukemia, and his physician grew a cell line from the spleen, which he then patented and licensed to biotechnology companies to "commercially develop."  In each of these cases, something of value was taken from a patient, sometimes with their knowledge and consent, sometimes not.  In each case, the material contributed to the development of the nascent biotechnology industry, eventually being used to generate profit.

I would love to hear my readers' thoughts on the ethics of these situations.  After all, it seems wrong for someone to profit from cells taken from my body, but the cells are not inherently valuable... it's how they are used that is valuable.  Without intellectual input from a scientist, they are just cells.  But does this mean that, as the California Supreme Court ruled, I don't have any right to profits generated from tissues removed from my body?

One final note:  Ms. Skloot speaks eloquently about how Mrs. Lacks was treated by Johns Hopkins (and subsequently seemingly forgotten).  Just recently, the Johns Hopkins Urban Health Institute announced the Henrietta Lacks Award for Community-University Collaboration, a prize of $15,000 to a community entity that collaborates with Hopkins to work to improve the health and well-being of the residents of the City of Baltimore.

Thanks to Ms. Skloot, Van Smith, and Mike Rogers (all of whom have written about her), Henrietta Lacks will achieve some level of immortality beyond the HeLa cell.

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