Part 1 of the book touches on many of the major bioethical themes that we’ve discussed so far, including patient autonomy, informed consent, and equity in access. One initially striking thing is the way that Johns Hopkins seemed to offer unusual equity in access to health care for poor and African American patients. “Hopkins was the only major hospital for miles that treated black patients”; even though it was one of the top hospitals in the country, “its public wards…were filled with patients, most of them black and unable to pay their medical bills” (15). Skloot points to Hopkins’ historical origins as a charity hospital for the sick and poor; it certainly seems to have offered medical care that — according to the expectations of the time and the values of the medical profession — offered something like a real commitment to distributive justice.
However, as we move through the reading, we see another reason why broad access to care might have been provided at Hopkins. In exchange for treatment, patients were essentially expected to forfeit their patient autonomy and right to informed consent. It seemed to be an operating assumption at the hospital “that since patients were treated for free in the public wards, it was fair to use them as research subjects as a form of payment” (30).
Herietta’s case exemplifies this. First of all, the “operating permit” that she signed before her treatment would not qualify as informed consent under Canterbury vs. Spence or any other test. This was a generic waiver for all procedures that the doctors might decide on at any point in the future; she would have no knowledge of and no role in deciding specific interventions (31). In addition, she was apparently not informed that the result of her treatment would be infertility (46). Even though information about hysterectomies was supposed to be provided at the time, it seems that black patients were often just not told. Their agreement was not considered necessary, an especially extreme form of paternalism (“benevolent deception”). Henrietta also had no knowledge that her cervical tissue would be cultivated and used in experiments by doctor Gey. Autonomy over her own tissue and how it might be used was not recognized.
Also, Henrietta was denied ownership over and financial stake in her physical and genetic material, which has since been used in countless experiments and to make countless people wealthy. In the book, Henrietta’s family seems angry both that she never received recognition and that there was no effort to remunerate her family for the financial gains from her tissue. As Henrietta’s story becomes more widespread, it’s interesting to think how it might affect decisions about how people are paid for their contributions to medical experiments and the results of those experiments. Could we one day patent our own DNA or tissue and hold a certain ownership over it for the purposes of research and resultant products and procedures?