In the third part of “The Immortal Life of Henrietta Lacks”, Skloot works with Henrietta Lack’s family to find out what really happened with the HeLa cells. As in the first two parts, abuse of power and informed consent, as well as racism plays prevalent roles in the story.
While it is obviously highly immoral at the individual level for a doctor to violate laws of informed consent and essentially steal property through the loophole of fine print on a legal document, I think that this issue is an overall systemic problem. Moore v Regents of the University of California is a prime example of where priorities lie for not only the doctors but also the American Government. John Moore, a patient who had his spleen removed, unknowingly signed his right to his cells away on a consent form. Due to the cells high antibody count it was extremely coveted by scientists and the patent to the cells sold for billions of dollars. When Moore took it to court, even knowing the cells were obtained through violation of informed consent, the court sided with the scientists ruling that once a cell is taken from the body it is no longer that individual’s property. The courts had one motivation: prevent de-motivation of researchers and companies, as well as maintain continued scientific discovery. As this example points out, the government cares more about monetary gain then the individual rights of its citizens.
Monetary gain over the wellbeing of society is again highlighted by the continued poverty of the Lacks family. The HeLa cells brought large monetary gain to multiple corporations, however Deborah who had significant health issues was unable to receive reliable medical treatment even though it was her mother’s cells that have brought wealth and scientific achievement to those who could help her. The fact that it took so many years for the Lacks to find out what was going on with Henrietta’s cells shows just how little the doctors care about Henrietta or her family past what they can do to maintain their research goals. The family was not contacted until they were asking for blood samples to fix the “contamination problem”, nor did the scientists care to have more information on Henrietta or her family past what it could do to make their research articles on HeLa have more “character”. With it so engrained in our society, will we ever be able to reform the blatant disregard of racism and human rights by our society in pursuit of monetary gain?
I found Cassie’s analysis surrounding the prioritization of monetary gain over individual autonomy incredibly relevant. As Cassie mentions, the final ruling in Moore v Regents of the University of California was based more on a fear of hindering further scientific discovery rather than on the clear lack of informed consent and abuse of power. When evaluating Moore’s case, these last two factors occurred on an appalling level. When Moore asked Golde whether the follow up work on his cells had any commercial value, Golde blatantly lied even though the market value of the Mo cell line at that point was already around $3 billion. It could be worth considering: did Golde feel the need to lie about his intentions because he himself thought that commercializing someone else’s biological material was intrinsically unethical and therefore believed that he would not receive Moore’s consent if he told the truth?
Then, there is the irony of the court using the lack of a lawsuit over HeLa cells as justification for their ruling in Moore’s case, when in reality, as Cassie points out, the Lacks were never told what Henrietta’s cells were actually being used for. Cassie highlights the clear injustices in the fact that the Lacks struggled with poverty while HeLa was saving millions of people’s lives. It’s evident from both the Lacks’ and Moore’s situation that at the time, patients were unfairly treated merely as a means to an often economic end rather than as autonomous individuals in their own right.
Cassie, I completely agree. I think it’s easy to see a problem as one dimensional: “just reprimand the individual doctor”. But, the truth is that the disrespect of Henrietta’s body and family was casually ingrained into the everyday behavior of American doctors. In the case you gave for Moore vs. Regents, it’s a matter of seeing the person as less than human, in this case monetary cash cows, and thus not worthy of human rights. America is a country based on the exploitation of human bodies and the problem runs deep throughout the government, research institutions, and the medical system. It’s a cultural dilemma that would only be fixed by cases such as Moore vs. Regent. However, if this book has shown us nothing else, it is that every generation seems to create a new means of immoral practices (take this generation and the current issue of different technological systems hording personal information from citizens without full consent, ei. Facebook). Capitalistic exploitation feels so integrated into this country that we’re unable to break the cycle no matter how hard we try. It’s as though we have to maintain a constant state of awareness and suspicion in our institutions while individuals of this society are left to “do the right thing”.
Skloot uses royalties from this book to donate to Henrietta’s family as well as sets up foundations around awareness for this topic. But why did America make it her job? Why did one woman bridge the gap in history that should have long been known? Why did it take a foreigner’s apology? America has a long way to go and it begins with our culture reprioritizing humanity over profit.