LAW SOCIETY & JUSTICE
“Examining Issues of Social Justice and the Rule of Law through the Humanities: The Immortal Life of Henrietta Lacks.”
By Professor Jason Leggett, Kira Brannigan, Artem Gordon, and Daisean Brewster
The study of law, society, and justice claims that law, legal practices, and legal institutions can be understood only by seeing and explaining them within social contexts through systematic comparison between theory and data while offering critical judgment. Because “law on the books” is not the same as law “in action” the law and society movement seeks to develop a deep appreciation for the complex dynamics of law and culture. Through this case study of Henrietta Lacks we applied professor-student notions of social justice to the socio-legal issues involved in the medical treatment and scientific study of Henrietta Lacks cells.
Humanities can inform the “human” development of the rule of law in a society with ever increasing demands for equality, historic structures of inequality of access, and the desire for recognition in human dignity or – social justice in an ideal beloved community of engaged citizens – and the limitations of the state in imagining that equality. To paraphrase contemporary philosopher, Slavoj Zizek, philosophers don’t hold great wisdom or answers, for ideology is superstition, they ask the right questions, showing us the struggle between the ideal and the real. It is in the stories of those who are unseen, the real in the process of struggle of the dominant ideal, that we learn about what we want the rule of law to be, whom we want to be, which is the essence of being human, seeking an understanding of the world around us and our place in that world. As Alexis de Tocqueville first noted in the 1840’s, “scarcely a political question arises in the United States that is not resolved, sooner or later, into a judicial question.“ In this case, the social inequality, cultural indignity, and scientific abuse of Henrietta Lacks inform the need for a humanities-based “philosophy of right” and the politics of equality in our judicial processes.
The story of Henrietta Lacks and her infamous cells lie at the crossroads of the ideal of the law, how society constructs the rule of law, and our notions of justice and equality as humans. Historically the concept of “the law” has been described as the slow, organic distillation of the spirit of a particular people or the social relations over the millennia as a movement from status to contract. Either way of conceptualizing law, one must question, whether the rule of law is undermined, as the philosophical basis of western liberal tradition, when a woman is not recognized under the law, is unaware of the law, but is somehow able to convey property under the law, which can be bought and sold, under the law, for private benefit in the public interest. In this collaborative paper, we explore three student perspectives as they apply an ideological critical axis to the story of Henrietta Lacks to see what we can learn about law, society, and justice.
Law: Unjust Enrichment, Consent, Recognition and Status
By Kira Brannigan
It is unrealistic and intellectually dishonest to argue that Henrietta comprehended the repercussions of informed consent. Had she been educated, regarding human rights and informed consent, she may have chosen to decline to have her cells taken and experimented on. Scientists never would have reaped the benefits from the financially defined value of the cells on the “market,” or achieved considerable credit for their scientific “discoveries” and contributions, including a vaccine for polio and a cell reproduction technologies used today. One could argue that the real “contribution” to science, industry, and the public was Henrietta herself. Her detriment was to the benefit of science. The very cells that created a vaccine for polio, and changed modern medicine as we know it, weren’t able to save the life of the source itself.
For me, the idea of unjust enrichment was a key theme of this story. The patients’s lack of knowledge was used against her, to her disadvantage, to unjustly benefit from the essence of morality, the heart of medical ethics and patient rights. A general underlying theory of private/civil law is that of making the injured party whole (thus restoring her to equality in the eyes of the law). Unjust enrichment would require a showing that the medical researchers and doctors denied Henrietta protection and information so that they could benefit financially and in reputation from the study of her cells, to her detriment.
Rebecca Skloot observes, “since the Common Rule says that research subjects must be allowed to withdraw from research at any time, these experts have told me that, in theory, the Lacks family might be able to withdraw HeLa cells from all research worldwide” (p 328). I think this is especially relevant, because it just reinforces the ignorance that the Lacks’ family had in regard to what happened to Henrietta, and how science was changed because of her contribution to it. It speaks volumes that there wasn’t really anyone advocating for the rights of the family, and it is unrealistic to assume that they would be able to defend themselves, given the lack of education and opportunities for advancement. Ironically, even though it would never bring back their mother, I think retribution would have given the Lacks’ children a fighting chance at being better prepared for the future.
Society: Bio-Ethics, Science for the Human Experience, the Ideal and Real
By Artem Gordon
In the 1950’s it was almost impossible for any judge or doctor to give serious attention on any matter connected with African -Americans, especially the poor. I don’t blame the Lacks family for trying to get recognition for a share of what became of their mother because medical science seem to be wildly concerned for the survival of their science but not to even think about the personal rights of the patients. Medical researchers need to maintain proper personal respect for all their patients, those patients will give respect back, and by working together we will all excel. So what keeps us from this beloved community of humanitarian science?
The underlying problem for medical researchers is: what if the patient you are analyzing might have the next best mutated cell, making you famous and wealthy, that can treat or cure hundreds of diseases, but that patient won’t give you the authority to experiment on, what is after all, their body? In the case of Henrietta Lacks, the answer was to ignore the human element of the “HeLa” cells and when the family wanted to learn about her cells, no doctor or scientist bothered to say a word, which would have, in every way, improved the medical-science existence of these humans. Simultaneously destroying the same pillar (human existence) by claiming to advance that same pillar (human existence) won’t bring science to a pinnacle of progress for human existence.
To imagine a society where science brings no affliction but only beneficence would be to imagine scientists who are responsible and honest with their patients, just as they are with their work. Albert Einstein once said, “science is a powerful instrument, how it is used, whether it is a blessing our a curse to mankind, depends on mankind and not on the instrument.” Today, science in the right hands can create wonders by building an understanding an awareness of what our minds are capable of creating. We can have presently unimaginable control, but with control comes power, and with power comes emotion, which could lead to catastrophe. That is why when it comes to science, we all need to think twice about what is good and what is bad, an not only for you, but for all of humankind.
Christoph, the current researcher at Hopkins responds to the Lacks family by stating, “I don’t blame you for being angry…her cels are how it all started…once there is a cure for cancer, it’s definitely largely because of your mother’s cells” (p. 267). Despite all the mistrust, pain, and theft from the Lacks’, Henrietta’s daughter says, “truth be told, I can’t get mad at science, because it help people live, and I’d be a mess without it… I would like some health insurance….” (p.256). Until we move beyond who deserves the right to health care, to provide scientific research to better all human life, we can not ethically say we are a beloved community of medical science.
Justice: From Injustice to Human Progress, Society & Culture
By Daisean Brewster
The story of Henrietta Lacks is a peculiar one because it questions so many aspects of our ideals of law, society, and justice. It explores socio-economic status and rights, humane treatment, informed consent and legal identity, and who should benefit from medical scientific discovery. But while it did not seem out of place that a black woman was taken advantage of because of her lack of education and understanding of the medical world at the time, it seems completely odd that we live in a society where a doctor, another person, can take a literal piece of you, and profit from the reproduction and sale of that, and that separately, you remain poor.
I believe for the rule of law to truly be just, it must apply to everyone. But in this society, to enforce your rights, you and your rights have to be known. People from Henrietta’s home town now fear doctors. But who could blame them? The world they see includes a story, as a representative life-lesson, where a black, poor woman walks into John Hopkins with a pain in her abdomen, is dead 8 months later, her cells create a multi-billion dollar industry and scientific prestige, while she lies in the “black cemetery” without a headstone, and her family struggles to pay for basic needs, including medicine.
Have we progressed from practices like this? In some ways yes, I believe we have. But the uneducated and indigent people of this country are still mistreated and so overlooked on such a broad scale that it is scary sometimes to think that this is the world we live in. We as humans find it easier to solve things that can have a clear solution, something that can be tackled at many angles to find common answers. Curing cancer or solving equations are calculated things that can be studied and tested. But equality is subjective, it depends on the perspective of who is asking and who is being asked. People seem to rather believe wild narratives, like the poor choose not to know their rights and should try harder to be recognized and succeed.
Society can become better by learning that there is injustice in the world. There is a voice unheard. There are people who are downtrodden and mistreated everyday. Society needs to want to change first. We need to create a new culture of caring. If someone with the ability to help Henrietta had cared, perhaps the social balance of the world wouldn’t be so one-sided toward injustice.
