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?
life and breath: outliving lung cancer 