Matthew Buckwald Dr. Kimberly Leighton

The Legacy of Henrietta Lacks: Reconciliation and Intersectionality

At Johns Hopkins Hospital in 1951, a poor black woman from inner­city Baltimore with cervical cancer underwent a biopsy that would be later used to cure the greatest of medical mysteries around the world, without her consent. Although Johns Hopkins has made attempts to atone for this moral mistake, the lack of an intersectional framework in the evaluation of this historical event negates the value that these attempts were meant to convey because without it, the inducements to Lacks’ family and the greater Baltimore community are nothing more than arbitrary pleads for forgiveness. Pleads do not rectify a non­consensual tissue sampling that changed the world, thoughtful, intersectional programs and services would do this calamity more justice. In developing my argument, I will first establish the moral harm done in the case of

Henrietta lacks, followed by an explanation of the programs currently used by Johns Hopkins to reconcile for it. From here, I will refute the effectiveness of these programs by explicating the lack of an intersectional scheme, then use examples of other bioethical incidents in which an intersectional scheme was used in penance.

Johns Hopkins Hospital has created a website with the intention of displaying the efforts that have been made to transcend a moral mishap into an honored legacy. On the FAQ tab in response to the question “Were Henrietta Lacks’ cells taken without her consent?,” Johns

Hopkins takes a very defensive approach by responding with, “In the 1950s, when Henrietta

Lacks was hospitalized, there were no established practices for informing or obtaining consent from patients when retrieving cell or tissue samples for research purposes, nor were there any regulations on the use of patients’ cells in research” (FAQ Johns Hopkins Medicine ). In this sense, the Hospital does not argue for any moral harms. They did not lie to Henrietta, supposedly there was no profit to the Hospital after the discovery of the HeLa cell, and there was no lawful framework to obstruct this from happening. Regardless, Johns Hopkins took Henrietta Lacks’ cells without her consent, shared the discovery of the unique genome with the entire medical community, used it to contribute to modern health innovations, and profited, if not with money then with fame and prestige, from the contribution, without so much as compensating Lacks or giving her the recognition she deserves. There is a clear moral violation made in usurping someone’s bodily autonomy. By not admitting this harm, the damage is only made worse. The focus on the webpage was clearly more on the impact of the cells than the impact of a vulnerable woman who was forced to share part of her biology with the world.

Efforts have certainly been made on behalf of Johns Hopkins and the United States government, more specifically the National Institutes of Health, to compensate for their moral wrongdoings. Professionals from both institutions met with the family to develop plans and strategies of how to prevent this in the future. Throughout their discussions, it became clear that the most desirable things for her family was not only to acknowledge and protect their mother’s legacy, but also to prevent this from happening to anyone else in the future. According to Dr.

Francis Collins, director of the NIH, in an National Public Radio interview, he made it clear that the privacy issues involving HeLa cells are very personal as they contain the hereditary information that Lacks was born with. It is essential that respect is given to the family in how they would like to deal with that. He recounted that the sequence could be made available but, as decided by the Lacks family, in a manner where there is a need for researchers to have them along with an annual report that researchers, along with two members of the family, must review

(Doucleff NPR ) .

According to their website, Hopkins is now committed to education and outreach, to increase awareness of her impact to medical society and create an open dialogue around the social issues of what happened. With new personnel specifically granted the job of achieving these goals with cooperation from the Lacks family, there are now multiple symposia each year with purposes. One event is the annual Henrietta Lacks memorial lecture which brings in hundreds of the country’s top scholars, researchers, and physicians to discuss their new ways to ensure privacy and consent in bioethical issues, an event at which members of the Lacks family often give lectures. There is also a high school symposium to teach high schoolers about her legacy and the impact it has had on medical research, along with an East Baltimore high school scholarship, given to a graduate pursuing the medical sciences. The Hopkins’ Urban Health

Institute also offers a $15,000 grant to community based organizations that partner with Hopkins researchers to address health challenges to those in Baltimore (The Legacy of Henrietta Lacks).

This optimistic approach, leaves absent the answer to the next step in the reconciliation process. Take, for example, an interview with director of the University of Minnesota Center for

Bioethics, Dr. Debra DeBruin, who suggests that there is far more to the reconciling this moral mishap than just privacy and honor concerns. She says, “In addition to being concerned about privacy and consent, we should also consider if people who provide tissues for research benefit in any way. Some of the real significant issues in this case relate to a lack of respect for Ms.

Lacks and her family, as well as justice, race and social class. The HeLa cells were fueling modern medical innovations, yet the Lacks family didn’t have access to basic care back then” ( Health Talk ). There was absent any thought to the Lacks’ socioeconomic class and role in social society both in Henrietta’s time and today. These factors alone draw upon the identities of wealth, class, race, and urban geopolitical disadvantages. Without the understanding of how not only Henrietta’s incident, but also many of the programs and services offered today, may variously affect different communities, it is clear that an intersectional approach to the dilemma is absent.

One of the directors of the programs remarked that this scholarship is “one of the ultimate ways to honor Henrietta… giving money to people who understand the unique challenges of this community… Our responsibility is to honor the legacy of Henrietta” (The

Legacy of Henrietta Lacks). These programs are undoubtedly making a change in the Baltimore and medical community, but it still lacks a critical element of the moral harm done: intersectionality, which refers to the myriad of identities and social categorizations such as socioeconomic class, race, gender identity, sexual orientation, and so on, and the sociopolitical impacts that they have on those most affected by these intersections. Intersectionality is a crucial element in contemporary bioethical debates because actions and behaviors in the medical field will affect different communities in a myriad of ways. The effects of intersectionality in the health professions are far­reaching and real. When societal institutions place a lower degree of intersectional well­being on a population, that group subsequently receives a perceived lower moral status that comes with serious health defects. The work that Johns Hopkins is doing to reconcile for their moral mishap does not contain the value of reconciliation that is needed, because their evaluation of the event completely disregarded the fact that Lacks came from a vulnerable population that has already been systematically taken advantage of with their intersections of poverty, race, and urban residence.

In an answer to an FAQ, “How does Johns Hopkins honor Henrietta Lacks?,” the response read “a critical part of these efforts has been the creation of both scholarly and community forums for addressing the implications of the Henrietta Lacks’ story from informed consent, to medical records privacy, to communication with tissue donors and research participants” (FAQ Johns Hopkins Medicine ). The website, these programs, and the information, although informative and positively impactful in their own way, are completely missing one of the most central themes of the Lacks case. It clearly highlights a relevant moral issue of consent, doing a great and thorough job of explaining the differences in consent then and now, but it makes intersectionality invisibile as a non­concern. There was no mention that Henrietta was a poor, black woman from inner­city Baltimore whose family did not even have adequate access to healthcare at that time. So many of the monetary and human resources being used on these symposiums and events could be used to eradicate the overwhelming gap in healthcare quality and coverage amongst minority identity groups. Categorical distinctions on kinds of people make it easy to put harm onto those who are already lower in hierarchical categories.

Due to these conditions and the lack of intersectionality in their evaluation of this moral mistake, it is clear the Johns Hopkins’ programs, albeit making a marginal impact on the

Baltimore community, do not have the value that they should have in order to effectively reconcile for this historical event. Instead, the scholarships, symposia, and events that the

Hospital support are more representative of a remorseful facade, rather than a thoughtful account of the reality of many patients just lack Henrietta Lacks. When intersections of identities determines that a group is lower on the social hierarchy, they carry with themselves a lower moral standard and, thus, lack of health standards, as determined by society. Programs like reaching out to the inner­city Baltimore community through the high school symposium, high school scholarship, and community organization grant, seem to be arbitrary instances of hospitality without the framework of intersectionality.

Henrietta Lacks was not the first marginalized person to be taken advantage of for medical research purposes. Rebecca Skloot, author of the book on Lacks, more comprehensively accounts for intersectionality in her attempt to right the wrongs of the case via her creation of the

Henrietta Lacks Foundation. According to the website, “The Henrietta Lacks Foundation seeks to provide assistance to individuals and their families who have been directly impacted by such research,” with “such research” referring to “research studies conducted on individuals

­particularly within minority communities­ without their knowledge or consent.” In order to apply for a grant from the Foundation, “You or someone in your immediate family must have made a significant contribution to science as a research subject without personal benefit, particularly those who have been used in research or contributed biological materials for research without their knowledge or consent” (About The Foundation, Henrietta Lacks Foundation ) and you must demonstrate financial need. The website mentions that they particularly look for minority students and/or those who are systematically disadvantaged. The people this money is granted to are clearly systematically oppressed people whose intersections work against them.

In another example, the Tuskegee experiments from 1932 to 1972 rounded up 399 subjects poor, African­American men living in Macon County, Alabama, where Tuskegee is the chief town who had latent syphilis, not infectious syphilis, to study the course of the disease. Even after the cure of syphilis had been discovered, the participants of the study were not treated, clearly violated standard moral codes of medical research. With that being said, there was a blatant effect of intersectionality in the study, as poor black men were (and still are, for that matter) a vulnerable population to which society ascribes a lower moral and health standard compared to everyone else. In this case, the Center for Disease Control compensated for their wrongdoing in the following manner: living syphilitic group participants received $37,500, heirs of deceased syphilitic group participants received $15,000, living control group participants received $16,000, heirs of deceased control group participants received $5,000, and infected wives, ex­wives, widows and offspring received lifetime medical and health benefits (U.S.

Public Health Service Syphilis Study at Tuskegee). The problem of the disadvantaged group being perpetually deprived was alleviated in this case. In Bill Clinton’s presidential apology, he remarked, “Men who were poor and African American, without resources and with few alternatives, they believed they had found hope when they were offered free medical care by the

United States Public Health Service. They were betrayed” (U.S. Public Health Service Syphilis

Study at Tuskegee). Evidently, the thought of intersectionality was not missed when evaluated the moral harm done to this community. Therefore, the reconciliation via monetary compensation and health care benefits to the affected groups had true value that effectively atoned for this particular case. Although the cases of Tuskegee and Henrietta lacks differ greatly, had Johns

Hopkins taken into account what the US government has already, perhaps their compensation would be similarly reflective and meaningful.

According to Henrietta’s granddaughter, Jeri Lacks­Whye, "For more than 60 years our family has been pulled into science without our consent … We are happy to be part of that conversation now, and we see this as an important step" (McCarthy The Guardian ). If only

Johns Hopkins considered the realities that Ms. Lacks­Whye’s community is really facing, then maybe the next “step” could be the final, impactful one.

Works Cited

“About The Foundation – Henrietta Lacks Foundation™.” Henrietta Lacks Foundation™ ,

henriettalacksfoundation.org/about/.

Doucleff, Michaeleen. “Decades After Henrietta Lacks' Death, Family Gets A Say On Her

Cells.” NPR , NPR, 7 Aug. 2013,

www.npr.org/sections/health­shots/2013/08/07/209807857/decades­after­lacks­death­

family­gets­a­say­on­her­cells?sc=tw.

“Frequently Asked Questions.” Johns Hopkins Medicine , 13 Oct. 2017,

www.hopkinsmedicine.org/henriettalacks/frequently­asked­questions.html.

“The Legacy of Henrietta Lacks.” Johns Hopkins Medicine, Based in Baltimore, Maryland ,

12 Apr. 2017, www.hopkinsmedicine.org/henriettalacks/index.html.

McCarthy, Tom. “Henrietta Lacks Formally Recognised as Source of HeLa Research

Cells.” The Guardian , Guardian News and Media, 7 Aug. 2013,

www.theguardian.com/science/2013/aug/07/henrietta­lacks­hela­cells­research?CMP

=twt_gu.

“Origin of HeLa Cells Continues to Impact Research Ethics.” Health Talk , 4 Dec. 2014,

www.healthtalk.umn.edu/2014/11/11/origin­of­hela­cells­continues­to­impactresearc

h­ethics/.

“U.S. Public Health Service Syphilis Study at Tuskegee.” Centers for Disease Control and

Prevention , Centers for Disease Control and Prevention, 24 Sept. 2013,

www.cdc.gov/tuskegee/clintonp.htm.