Tag Archives: Henrietta Lacks

Henrietta Lacks and her legacy

The Senate has passed a Henrietta Lacks Bill.

Henrietta Lack’s story is a cautionary tale and this bill is an attempt to right an eternal wrong (the cell line derived from Henrietta’s tumor is immortal).

However, I can’t help but feel that this is not only too little too late, it is disingenuous as well. Take line seven and eight from the bill:

(8) For more than 20 years, the advances made possible by Henrietta Lacks’ cells were without her or her family’s consent, and the revenues they generated were not known to or shared with her family.

(9) Henrietta Lacks and her family’s experience is fundamental to modern and future bioethics policies and informed consent laws that benefit patients nationwide by building patient trust; promoting ethical research that benefits all individuals, including traditionally underrepresented populations; and protecting research participants.

So what has changed in the 70 years since tissue was taken from the tumor of Henrietta Lack’s without her knowledge? This. Now we must give informed consent. However, how informed is that consent? As I quoted an article from ASCO in a previous post:  ‘Informed consent forms may not adequately describe the risks and the nonbeneficial nature of research biopsies in language that facilitates comprehension.

There have been efforts to make reparations to the Lacks family–in October a six figure donation was made to The Henrietta Lacks Foundation by the Howard Hughes Medical Institute. But I can assure you that those of us participating in medical research now do not share in any of the profit and to suggest otherwise is erroneous. Should we be injured as a result of a clinical trial, there are no reparations–our insurance will be billed. If we are lucky, then some of our additional expenses are repaid. In my own case, I have yet to be compensated for anything. Certainly not co-pays. Not even my parking.

I am not in the position, as a white woman, to even begin to address the part of Henrietta’s story that has to do with race. All I can do is to acknowledge it. Henrietta’s story, like the Tuskegee Syphilis Study, took place such a very short time ago. And faith takes a very long time to rebuild. The Henrietta Lacks Bill will oversee a study into barriers to participation in medical research. Some of those barriers–mistrust and misunderstanding, are both understandable and difficult to address. However, transparency is an excellent place to start.

This is where I am qualified to comment. As someone who has now spent more than a decade in clinical trials, I have had to learn as I have gone along. The difference between a research biopsy and a clinical biopsy? I figured that out a very short time ago, and only because I asked a specific question regarding return of results.

So. It’s good that medical research is having such a moment. But let’s not pretend that something like informed consent is all about the patient. No, it is essentially legal jargon, designed to protect the physician from litigation. The tip off? That word consent, which connotes permission. Because how can you say yes with certainty when you don’t truly understand what it is that you are agreeing to?

And here I go, reacting

Can’t help it, y’all. As I scramble to come up with the money to pay last years taxes, it hurts, actually hurts, to know that those who participate in clinical trials for a COVID-19 vaccine are being compensated.

Read this article from the NCBI and weep. Tell me, again, why it is that those of us who are both unfortunate enough to have contracted terminal cancer and also desperate enough to stay alive that we will do almost anything, are somehow a different story. Are we too not deserving of assistance and recognition “for the fair value of…time and effort expended in research participation?

And how about this paragraph rationalizing compensation for vaccine ‘volunteers’: “Compensation also should be viewed as the ethical default because it helps to minimize the chance participants will be exploited by receiving benefits that are disproportionately low compared to the burdens they undertake and the value they contribute to research. While the prospect of direct benefit is relevant to avoiding exploitation, research benefits are not always present and are never certain. Thus, it often makes sense to compensate participants for their work via a wage-payment model, using a fair local wage for similarly burdensome nonresearch endeavors as a benchmark. This is not intended to make participants better off as compared to their financial baseline or even to fully compensate for participants’ opportunity costs but rather to acknowledge the value of their time and effort. Compensation can also help distinguish research activities, with their distinct goals and risks, from clinical care, signaling that participants are contributing to science and that individual benefit may not result from their research participation.

Um, yeah. I can hope like hell that when I participate in a clinical trial I shall attain some personal benefit, but–particularly in phase I where safety versus efficacy is being assessed–it’s a crapshoot.

So why why why why why why why are cancer patients treated differently? This is a human rights issue. I am/we are more than our tissue. Those of us dealing with advanced cancer are desperately ill individuals who are taking on tremendous risk and burden in order to A. hopefully live longer and B. advance medical research—A being the far dicier of the two propositions.

And then there is this curious sentence: “We argue that reimbursement and compensation should be offered in COVID-19 trials as a matter of fairness, as is true for other types of clinical research.” I’m all for the fairness part but clearly they are talking about medical research with ‘healthy volunteers’, not those of us with cancer.

Thanks to COVID-19, clinical trials are having a big ass moment right now. Let’s not waste this opportunity to have some constructive dialogue per ongoing issues related to medical research such as disparity, accrual and compensation. And while we’re at it, let’s stop hiding the dirty little secret that exploiting cancer patients didn’t stop with Henrietta Lacks.

We can, and should, do better.