Earlier this week, I helped lead a discussion of Rebecca Skloot’s book The Immortal Life of Henrietta Lacks as part of the Trumbull public library‘s One Book One Town series.  My co-leader was Laura Stark from the Science and Society/Department of Sociology at Wesleyan University.  Laura was a fact-checker for the book while she was a fellow at the Office of National Institutes of Health History.  Laura focused on points raised in her forthcoming book, Behind Closed Doors: IRBs and the Making of Ethical Research, which will be published in November with The University of Chicago Press.  She looked at how the treatment of human subjects in the United States has evolved since the Second World War and this impacts Institutional Review Boards today.  My emphasis was on standards of care for cervical cancer patients then and now, and how this intersected with prevailing issues of race, gender, and class.   As Skloot observes, Henrietta’s care was typical of teaching hospitals at this time, and Johns Hopkins was one of the few in the region that admitted African American patients (albeit in segregated wards).  During the 1940s and early 1950s, there was no Medicaid and third party private insurance was only beginning to become an employee  benefit.  So, as a “charity patient” Henrietta received state of the art cancer treatment that many at that time could not afford.  The care would have been the same had she been white.  Yet, the prevailing attitude at the time was that since “charity cases” were treated for free, doctors were entitled to use them in research, whether the patients realized it or not. Henrietta’s doctor once wrote, “Hopkins, with its large indigent black population, had no dearth of clinical material.”

Also, epidemiological studies of cervical cancer tended to reinforce cultural prejudices about race and socioeconomic status of the time period. By the early 1950s, researchers noticed that cervical cancer was common in prostitutes and others with multiple sexual partners; rare in Jewish and Muslim women; and practically non-existent in nuns and virgins.  There was considerable debate about whether this was due to an infectious agent or genetics. The notion that different races had propensity to certain diseases was common  — e.g. blacks were characterized as a “notoriously syphilis-soaked race” while Jewish persons were believed to be more prone to respiratory illnesses like TB. So, “race medicine” included the theory that Jewish and Muslim women were more likely to develop cervical cancer because of their “race.”  We now know that male circumcision helps prevent the transmission of sexually transmitted infections, such as the human papilloma viruses that cause many genital cancers. Starting in the 1950s, scientists explored the link between adolescent sexual activity and the development of cervical cancer later in life. Several epidemiological studies published in the 1950s and early 1960s indicated that women who married before age 20 appeared to be at higher risk for cervical cancer. Some speculated that women who had multiple “broken marriages” were especially susceptible. Some cancer researchers hypothesized that some kind of infectious agent transmitted by male partners was a contributing factor, and that the adolescent cervix was especially vulnerable to “epithelial transformation” by exposure to such an agent. Given that a disproportionate number of patients were nonwhite, non-Jewish women of low socioeconomic status, recommended that routine pap smears were especially important for “nonvirgins” from underprivileged groups. These findings also tended to reinforce prevailing stereotypes about the links between disease risk, race, and class – those living in poverty – especially if they were nonwhite – more likely to be “promiscuous.”

At the same time, the introduction of Pap smear led to the notion that “cancer was curable” if caught early — this provided the justification for annual gynecological examinations.  Prior to Medicaid,  a young woman of Henrietta’s social class would not have had access to routine preventive medical care. Thus, the health disparities indicated by cervical cancer studies were used to justify government funded preventive screening for those living in poverty.

Another recent development has been efforts by health activists to make medical research more inclusive.  As Eileen Nechas and Denise Foley show in their book Unequal Treatment reformers fought to make sure that all studies funded by NIH included women, racial minorities, children and adolescents, where appropriate, historically “decisions on what aspect of health to study, on what research protocol to fund” were based “not only on scientific merit . . . but on a judgment of social worth. What is valuable to medicine is who is valuable to society, and that is white men.”  Since the late 1980, health activists fought to make sure that all studies funded by NIH included women, racial minorities, children and adolescents, where appropriate; and made sure that diseases that disproportionately affected these groups got “equal time” and money.

Here are the discussion questions we gave to the audience:

Should people have a right to control what’s done with their tissues once they’re removed from their bodies? And who, if anyone, should profit from those tissues?

Deborah says, “But I always have thought it was strange, if our mother cells done so much for medicine, how come her family can’t afford to see no doctors? Don’t make no sense” (page 9).   Should Lacks family be compensated by those who profited from research on HeLa cells?

How does this story relate to recent history of health care reform, and attempts to expand access to medical advances made possible by research on HeLa and other human tissues?

How can medical professionals recognize that certain diseases affect certain racial/ethnic groups without replicating prejudices of old “race medicine”?