I’m heartened by the discussions of medical ethics arising out of The Immortal Life of Henrietta Lacks. From reading and listening to interviews with writer Rebecca Skloot, and from my brief conversations with her, I know that medical ethics were very much on her mind during the ten years it took her to create the book. If you read the book, you will see that she was also very concerned that she not be just another exploiter of the Lacks family. That’s one reason comments such as this one are disturbing—-and at the same time not really disturbing at all. It helps to highlight the amount of distrust the scientific community has managed to bank.
(As a reminder, Henrietta Lacks was an African American woman who died of cervical cancer in the 1950s and whose cancer cells, taken without her explicit consent, became one of the most important tools of modern biology.)
We’ve all benefited from research made possible by Henrietta Lacks and countless others whose names have been forgotten. The amount of distrust we’ve banked with the public over the years is considerable, and will take a long time to mitigate. But there are many reasons to try to improve our trust balance sheet, not the least of which is our own self-interest.
But let’s back up a bit and get a little deeper into how we understand medical ethics.
Ethics are a way of understanding our behavior toward each other. It’s not a set of rules which one can simply check off and get an “I’m Ethical!” sticker. And ethics change as our values as a society change. Like many things in society, what is considered ethical is often a matter of perspective, with wealth and privilege often creating a certain set of assumptions (or creating blinders), but one of the goals of ethics is to create ways of relating to each other that take into account “the other”. Ethics that are determined by or benefit only one group are not very useful.
Henrietta Lacks was treated at a time when medical ethics were quite different. Certain values were already important, including patient confidentiality, but were understood much differently then now, and applied differently to different groups. Our modern understanding of the balance between patient autonomy and medical paternalism has shifted considerably. Not many decades ago, it was assumed that the doctor knew what was best for the patient, and the patient not only did not participate in decision making but was often not given significant information about their condition.
In practice this is a very difficult balance to strike. No patient can have the same perspective as the physician (and vice versa). The most medically knowledgeable patient, thrown into the sick role, may have somewhat impaired judgement. People come to physicians because we are experts and they want our opinion (at least under the best of circumstances). While we shouldn’t make decisions for our patients, we must judge how much guidance they want and how much they need, and help them make decisions that benefit them. This should be done ideally with the thought of the patient’s autonomy explicit in the thinking of the doctor.
In the case of Henrietta Lacks, her autonomy was violated, at least by modern definitions. She had little choice as to where she sought care (because of both economics and racism), and her care was delivered with little input from her. She was not well-educated, and communicating to her the details of her care would have taken a lot of work—work which would have benefited her. The cancer cells which went on to become the HeLa cell culture were not simply a by-product of her treatment. They were not leftover from surgery meant to help her. They were specimens taken explicitly (to the doctors) for research, and this should have been communicated to her. She should have been given the option of declining the procedure. (See here for a discussion of the consent given by Mrs. Lacks.)
When helping guide people through important health decisions we must keep in mind our goals. Explicit in modern medical ethics are the goals of beneficence and non-maleficence, that is, helping the patient and trying not to harm them. These goals, and that of autonomy, are often in conflict. In attempting to help a patient heal and prevent their death, we may recommend a certain behavior, for example, a pill. Even when the patient clearly understands the risks and benefits of the medication, they may still decline it, and because we value patient autonomy, we accept this. We usually accept it even though we perceive it as interfering with beneficence. But the principle of autonomy may demand that we allow patients to determine for themselves what they consider helpful, and no matter how crazy it may seem to doctors, a patient may decline a treatment we consider necessary.
Unless we choose to injure their autonomy. In the case of Henrietta Lacks, the doctors undoubtedly felt they were acting to help her, and the researches felt they were acting to help humankind. But Lacks and her family did not feel the same way. The ways in which the doctors and society as a whole dealt with Henrietta and the rest of the Lacks family failed to advance their dignity, and failed to provide them with justice, two more modern medical ethics.
Those who argue that this is all moot would be wise to keep their own self-interest in mind. Jeremy Singer-Vine discusses this at Slate.com, concluding:
Consent ultimately speeds us toward discovery and cures by boosting scientific trust within the communities that those researchers not only serve but also depend upon.
The fact that Lacks died a horrible death may or may not have been mitigated by more ethical behavior. But the suffering of her family certainly would have. This is where ethics can also get a bit difficult.
Understanding autonomy, beneficence, etc. requires attempting to understand another person’s perspective. This is very, very difficult for many. A comment from Ed Yong’s blog brings up one of these problems (and is typical from what I’ve seen on the web):
Paying people for blood/tissue donations is a bad precedent to set, most people are happy with the knowledge that they’ve helped medical research. And lets not forget that had she refused permission for her cells to be used then research would have been delayed but someone elses cells would have been cultured and we wouldn’t be having this conversation. (Emphasis mine, PAL)
What “most people” would be happy with is an interesting assumption, one which may or may not be true, but what is important in medicine is not just what “most people” want, but what the person sitting in front of you wants. While society’s needs may have been served by Mrs. Lacks, they were not served in a way that preserved her dignity and autonomy. Not only is a utilitarian argument ethically unpleasant, it’s invalid, as the cells and subsequent discoveries did not depend on abusing Mrs. Lacks.
Henrietta Lacks has served society long after her death through the involuntary donation of her cancer cells. With the publication of her story, she has added a new dimension of service, one in which we can elevate our discussion of medical ethics.