Reflections: A Dilemma of Medical Ethics

X
My friend Michele Battle-Fisher first made me aware of the story of Henrietta Lack and the cell line created using tissue from her body in a recent post on Facebook. The ethical questions raised by Henrietta’s story are both interesting and thorny. This week’s Sunday New York Times book review includes a review of a recent book documenting the history of that cell line, the moral and legal implications of its continued existence, and the almost uncanny implications that this version of “immortality” has had for Henrietta’s descendants.

I have chosen to post the following excerpts from this book review, both because the story is worthy of some thought in and of itself, and also because the final excerpt below highlights nicely the dichotomy between this country’s world-class medical technology, and its shameful failures in the area of health care delivery. This remains a distinction that is all-too-rarely made by politicians debating the issue.

To set the scene, here are the two opening paragraphs of the NY Times review:

From the very beginning there was something uncanny about the cancer cells on Henrietta Lacks’s cervix. Even before killing Lacks herself in 1951, they took on a life of their own. Removed during a biopsy and cultured without her permission, the HeLa cells (named from the first two letters of her first and last names) reproduced boisterously in a lab at Johns Hopkins — the first human cells ever to do so. HeLa became an instant biological celebrity, traveling to research labs all over the world. Meanwhile Lacks, a vivacious 31-year-old African-American who had once been a tobacco farmer, tended her five children and endured scarring radiation treatments in the hospital’s “colored” ward.

After Henrietta Lacks’s death, HeLa went viral, so to speak, becoming the godmother of virology and then biotech, benefiting practically anyone who’s ever taken a pill stronger than aspirin. Scientists have grown some 50 million metric tons of her cells, and you can get some for yourself simply by calling an 800 number. HeLa has helped build thousands of careers, not to mention more than 60,000 scientific studies, with nearly 10 more being published every day, revealing the secrets of everything from aging and cancer to mosquito mating and the cellular effects of working in sewers.

The next excerpt capsulizes the current state of the law with reference to the use of “medical waste” for research purposes:

In the 1980s a doctor who had removed the cancer-ridden spleen of a man named John Moore patented some of the cells to create a cell line then valued at more than $3 billion, without Moore’s knowledge. Moore sued, and on appeal the court ruled that patients had the right to control their tissues, but soon that was struck down by the California Supreme Court, which said that tissue removed from the body had been abandoned as medical waste. The cell line created by the doctor had been “transformed” via his “inventive effort,” and to say otherwise would “destroy the economic incentive to conduct important medical research.” The court said that doctors should disclose their financial interests and called on legislators to increase patient protections and regulation, but this has hardly hindered the growth of the field. In 1999 the RAND Corporation estimated that American labs alone held more than 307 million tissue samples from some 178 million people. Not only is the question of payment for profitable tissues unresolved, Skloot notes, but it’s still not necessary to obtain consent to store cells and tissue taken in diagnostic procedures and then use the samples for research.

Finally, we can see the strange predicament of Henrietta’s surviving family, as reflected in the words of her daughter, Deborah:

[Skloot] tacks between the perspective of the scientists and the family evenly and fairly, arriving at a paradox described by Henrietta’s daughter Deborah. “Truth be told, I can’t get mad at science, because it help people live, and I’d be a mess without it. I’m a walking drugstore! . . . But I won’t lie, I would like some health insurance so I don’t got to pay all that money every month for drugs my mother cells probably helped make.”

To sum up: the next time you hear a politician insisting that we have “the best health care system in the world” stop and ask yourself how and why—if that boilerplate is true—we can so easily, as a society, tolerate the cruel irony at the heart of the circumstance in which Henrietta’s daughter can’t afford her needed medications.

Your thoughts welcomed: irodak47@gmail.com
X