Our Biological Autonomy: What Corporate Boards & Healthcare Administrators still won’t Confront about the Henrietta Lacks Legacy
Does your blood and tissue and your genetic code belong to you, or to a corporation with the power to extract your blood, tissue or genetic material for the purposes of diagnosis, treatment or analysis? This question remains at the heart of the ethical dilemma that is the legacy of the story of Henrietta Lacks and her descendants.
Henrietta Lacks, the great-great-granddaughter of a slave who was herself a tobacco farmer, sought treatment for relentless vaginal bleeding at the Johns Hopkins hospital in 1951. At the time, Hopkins was one of the few hospitals that would provide such treatment for poor black Americans with, of course, the unspoken “understanding” that their bodies might be used to further scientific progress in whatever ways Hopkins saw fit. As is commonplace to this day, physicians took a tissue biopsy of her cancer cells during treatment and began to grow them in a lab to explore treatment options.
Henrietta Lacks’ cells grew prodigiously. They doubled in size every 20–24 hours, and scientists immediately began to use them to study the impact of toxins, drugs, hormones and viruses on her cancer cells. The primary laboratory physician conducting this research, Dr. George Gey, nicknamed the cells “HeLa cells” and sent them all over the world to other research scientists. He never told Henrietta Lacks (who only lived a few more months, passing away in October of 1951) or her descendants how her biological material was being used. He told interviewers the cells belonged to a “Helen Lane”. It wasn’t until twelve years later, in 1973, that members of the Lacks family discovered — by coincidental acquaintance with a research scientist who recognized their last name — that their mother’s (and therefore their) biological and genetic material was being used in thousands of scientific inquiries.
Even after Lacks’ family discovered this research was being conducted, no consent was requested or obtained from the Lacks family for many more years. It wasn’t until 2013 that the Lacks family became part of a board making decisions about the use of the HeLa cells (Caplan, 2013). This “say” in decision-making doesn’t exactly represent veto-power, either. It is inarguable that thousands of important scientific advances have been made because of the HeLa cell line. According to the New York Times, HeLa cells have been “at the core of treatments for hemophilia, herpes, influenza, leukemia, and Parkinson’s disease as well as the polio vaccine, the cancer drug tamoxifen, chemotherapy, gene mapping, and in vitro fertilization” (Hassan, n.d.). It is safe to say, untold millions have been made from these discoveries.
Hundreds of articles, an excellent history (The Immortal Life of Henrietta Lacks, by Rebecca Skloot) and a movie later, many of us are well-acquainted with the issues of healthcare access and disparities in healthcare provision the Lacks story puts into stark relief. What rarely gets discussed, is that very little has changed with regard to how corporations and the healthcare industry view our individual biological and genetic material.
While some claim that “much progress” has been made in informed consent because of how Lacks and her family were treated, citing the Declaration of Helsinki and the Common Rule (Uslan, 2017), the reality is that all legal consents for treatment to this day contain clauses stating that samples taken by healthcare providers during needed treatment become the property of the provider or corporation. If you don’t believe me, read the fine print on your next treatment consent at a hospital or laboratory, or the fine print of the 23andMe privacy policy.
The elephant in the ethics room is — we sign these consents because we need medical treatment, not because we truly consent to the dissemination and third party ownership of our blood, tissue or genetic material. While many make claims they have de-identified our information, we have no proof that this is the case, and we have no idea whether or not that de-identification is reversible. As much as the HIPAA policy has done to protect our healthcare information, the one thing it has not done is allowed the legal control over biological and genetic material to shift from corporations to individuals.
We should be loaning the unique information contained in our blood and tissue to hospitals and laboratories for the purpose of treatment and maybe, research — not giving it away wholesale, never to be controllable again. Control over our unique biological material is as much part and parcel of our right to privacy as our bodily autonomy. What happened to Henrietta Lacks and her family tells us: nothing matters more than our control — and our descendants’ control — over the very material that makes us who we are.
To learn more about the incredible legacy of Henrietta Lacks, please visit The Henrietta Lacks Foundation website and consider a donation to support their mission.
References
Assan, A. (n.d.) Overlooked: Henrietta Lacks. The New York Times. https://www.nytimes.com/interactive/2018/obituaries/overlooked-henrietta-lacks.html
Caplan, A. (2013). NIH finally makes good with Henrietta Lacks’ family — and it’s about time, ethicist says. NBC News. https://www.nbcnews.com/healthmain/nih-finally-makes-good-henrietta-lacks-family-its-about-time-6C10867941
Uslan, D. (2017). The Controversial Truth About Henrietta Lacks. Grunge. https://www.grunge.com/93123/controversial-truth-henrietta-lacks/
