Monday, December 20, 2010

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.


Will's Dad said...

I understand the need for IRB's, ethics, and the right to protect patient rights. I also fear that this extraordinarily litigious society we live in is going to thwart the types of innovation (read as: risk) that were taken in the past and resulted in such monumental gains in survival for kids with leukemia. The current over protective state seems more focussed on looking at every angle of every study not on its merit but on how this can damage the hospital. This terrifies me. The need for better therapies for all patients will be driven by people doing the kinds of things that today are most feared by hospital, IRB's, and patients lawyers ready to sue for any reason.

Lorin Decker Buck said...

I read about Mrs. Lacks in The Post back in September. I thought her story was fascinating, esp. in light of David's wish to establish a cell line (and his subsequent donation). I'll have to read Skloot's book, which seems to raise some interesting and compelling issues. Like my David, I want to support the cancer research we so desperately need and do not want to see unnecessary restrictions put in place that would impede the process.

BTW, in September we were contacted by a dad who's spearheading an effort to encourage parents to allow their children's tumors to be harvested for research. We dropped the ball and need to get back to him.

Would you recommend "The Emperor of Maladies: A Biography of Cancer"?

I see ASCO is looking for a medical editor/writer. I'm thinking of applying.

Good to see that you're blogging (and reading) again. : )

Doctor David said...

Thanks for your thoughts, both of you. Especially coming from parents of children with cancer.

Lori, I'm reading "Emperor of all Maladies" right now. I'm enjoying it very much, and that will probably be book review #2. ASCO would be lucky to have you on their staff!

Anonymous said...

Another great book is "The Emperor of All Maladies." It's about cancer as well. Amazing detail. Must read.

Susan said...

When I had breast cancer, I was asked to sign an informed consent to have any tissue taken from me frozen for future research. I have the right to have the cells thrown out if I wanted.

I signed because I didn't care what they did with the cancer cells. I certainly didn't want them! I'm thrilled they have a "piece" of me that might be used for research. If it helps in any way, that will be something positive that came from my illness.

I'm not sure if I should be compensated if my cells lead to something scientifically significant and produces an income. I don't think I want money from my breast cancer. I'd rather have my body back to the way it was before. Money isn't going to make that better. I ordered Rebecca Skloot's book from the library. It sounds like a good read.

Domingo said...

Great blog!

medical billing and collection said...

HeLa cells were vital for developing the polio vaccine; uncovered secrets of cancer, viruses, and the effects of the atom bomb; helped lead to important advances like in vitro fertilization, cloning, and gene mapping; and have been bought and sold by the billions. Yet Henrietta Lacks remains virtually unknown, buried in an unmarked grave. Although her cells launched a multimillion-dollar industry that sells human biological materials, her family never saw any of the profits.

Netherland said...

I am not sure what the history of the Lack's family might have been had circumstances unfolded differently, but I appreciated the author telling the story without drawing conclusions. I appreciated the author's ability to relate the story without bias or opinion, she provides a vehicle for the reader to muse and ponder the what if's of this story.

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