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04/24/2017

BioethicsTV: Henrietta Lacks and “Mary Kills People”

by Craig Klugman, Ph.D.

This past weekend was a bioethics bonanza when it came to cable television. First, HBO premiered its film version of The Immortal Life of Henrietta Lacks, seven years after the book’s original publication. Clocking in at a bit over an hour-and-a-half, the film version flows at a very slow pace. One feels the long hours spent driving on back roads through rural areas. The film centers on Deborah, Lacks’ daughter, played by Oprah Winfrey. Like the book, the focus is mainly on the relationship that develops between Deborah and journalist Rebecca Skloot (played by Rose Byrne). A science montage at the beginning explains the history of HeLa cells and what happened to Mrs. Lacks.

A popular book in the bioethics community, it showcases the poor treatment of African-American patients in the 1950s. The film emphasizes that we are supposed to be appalled that this woman’s cells were taken without her permission and that everyone made money off the cells except the family. The HeLa cell line was developed from cells taken from Mrs. Lacks’s tumor. Once removed from the body, the tumor cells are medical waste and under case law, the person from whom they came does not own them. The book and the movie question whether this should be. Even if Mrs. Lacks was having her tumor removed today, she would not profit from those cells. The book mentions, but the film barely touches on, that the physicians who performed Mrs. Lacks’ surgery and developed the cell line never took money for the cells, but freely gave them out.

More than the book, the film asks the question of whether Skloot was taking advantage of the family in writing this. Deborah is often angry at how people took advantage of their family and asks who will profit from this book. One example, which is an egregious ethical lapse, is that physicians took blood samples from the family to see if they might have these remarkable cells and also, because HeLa cells are prolific and aggressive, to be able to distinguish HeLa cells from other cell lines in a sample. The family was not told the reason that their blood was taken.

The film provides no answer on the profit and taking advantage questions except an epilogue statement that Skloot founded the Henrietta Lacks Foundation. The film also shows Skloot asking permission to record and share the story. Although the popularly raised ethics issue is whether Johns Hopkins took advantage of Mrs. Lacks and her family, the real concern is whether Skloot profited off of their history. However, the core ethical issue raised by this story is the cost of poverty and unequal opportunities for minorities in the U.S. The film provides a visual snapshot of the cost of structural poverty in a more vivid manner than the book.

Deborah is presented as broken, a woman who was destroyed over losing her mother at a very young age who probably also suffers from untreated mental illness. Skloot is not presented as heroic in the film, but rather as a bumbling young person, trying to figure out what she was doing while maxing out her credit cards to pay for it. Mrs. Lacks, however, is presented as poised, intelligent, hardworking, and loving. She is presented as a saint. I think it would have done better justice to present her as a real person rather than an idolized image, though that is how Deborah viewed her.

I have no doubt that this film will win several awards and Winfrey will at least be nominated for her dramatic and emotional performance. For the bioethics instructor, the film is a good synopsis of the book and would be a useful tool in the classroom for students who may be resistant to reading 328 pages.

Second, Lifetime launched its new medical series, Mary Kills People. This drama is about two physicians, Dr. Mary Harries and Des (no last name), who moonlight as “end of life consultants,” providing concierge assisted suicide services for a fee. Harris is the center of the series. She is an ER doc by day who recruits clients for her consulting service via Annie, a hospital nurse. Harris is recently divorced and has two kids. Des is a former plastic surgeon who is a recovering addict.

The show takes place in an unnamed English-speaking, North American city. The production is filmed in Ontario, so the lack of an identified location may be to draw in a broader audience. In this fictional setting, assisted suicide is not legal, which is an interesting take since Canada has legalized assisted suicide and several US states have also moved in that direction.

The series premieres with Harris squirting pentobarbital (“pento”) into a glass of champagne to help their client die. The client drinks the cocktail and falls asleep. As they leave, Harris realizes they forgot their payment and she goes back to find the client struggling for breath. She solves the situation by placing a pillow on his face. So much for the peaceful death. A second client is a rather robust and healthy young man with whom Harris attempts a sexual liaison. As we learn, he is actually an undercover cop, trying to catch her in the act of her illegal activities.

When we see Harris and Des meet their new client (the cop), they have a conversation about end of life without actually discussing their services. They talk about how one can choose to go to Switzerland for suicide tourism and that would cost $20,000 or one could stay in the comfort of home “for about half that.” “I believe we should be in control of our life and our death—that’s liberty…And dying isn’t a crime,” Harris explains. They talk around the topic but make it very clear what they use, how it works, and what it costs. I found the price of $10,000 interesting considering that after a price raise several years ago, the cost of a vial of pento is about $20,000. Of course, this is Canada, so the cost of the drug is probably far less.

Much of the drama of the show revolves around Harris’ home life. In the first episode, her daughter discovers Harris’ secret stash of pento. The rest of the drama revolves around securing good sources of the pento, which seems to be from Des’s former drug dealer. This challenge reflects a real-world problem with aid-in-dying. Since pento is the same drug used in executions, most European countries will not sell it to the US. Thus, the drug is hard to get (part of the reason that states are having trouble getting enough drugs to execute their prisoners).

In between the soap opera drama, Harris and Des have serious conversations about the ethics of their business. Upon learning that the first client did not die immediately, Des states that it would be much easier if they simply injected their clients. Harris is emphatic that the client must choose and take the drug him/herself. Injecting the drug is a line that she will not cross. This discussion parallels the debate between doctor assisted suicide (where the physician provides the means but the patient must administer the means) and medical euthanasia (where the physician administers the means). This fine distinction of causation confuses most people. In fact, one headline about this TV show says “Lifetime Celebrates Sexy, Soapy Euthanasia.” My guess is that at some point, Harris will be tempted to cross her moral line.”

In regards to the professionalism aspects of this medical service, Harris and Des discuss the ethics of having sex with their clients. Des raises the issue but says he has not crossed that boundary. Harris is tempted because she is single at the moment and the new client (cop) is pretty. But she says it’s wrong to have relations with your patients. Des points out that she will leave the client with a smile on his face and he won’t be filing any complaints. This exchange belittles the very serious problem of physicians and patients in sexual relations. That dismissiveness is toward the goal of drama, but it does provide an inaccurate portrayal of acceptable physician behavior.

Using a nurse in the hospital to scope out potential clients is also problematic. In a way, this is stealing patients from their employer. When most doctors leave a hospital or even moonlight elsewhere, they are prohibited from taking patients with them (although this is difficult to stop in actuality). This element also seems to normalize the notion of aid-in-dying as the “natural” choice when one is facing death. With every patient that Annie presents to Harris, the nurse states how awful their death would be without the concierge services. Although Harris works hard to make the decision the clients’, it seems that Annie may be coercive in describing all other possible deaths as horrible.

Given the ethical issues in assisted suicide, the show has many ethical challenges to explore. I’ll be curious to see if Harris tells a potential-client that she will not help someone who is very depressed or who is under 18. In many ways, the public debate about aid-in-dying in North America may be played out on the little screen as these characters push the line between Harris (doctor-assisted-suicide) and Des (euthanasia). In between, the tongue-in-cheek dialogue and poor life choices of the characters will provide some entertainment.

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