The Immortal Life of Henrietta Lacks by Rebecca Skloot describes the life of Henrietta Lacks, who was an African American woman who was treated at Johns Hopkins hospital in 1951 for cervical cancer. During her treatment tissue samples were taken and provided to a researcher without her permission. Henrietta’s cells were very unique because prior to this time human cells were not successfully grown outside the body. Henrietta’s cancer cells, however, survived outside the human body and were capable of dividing. Henrietta passed away, but her cells have and continue to be used today for medical research. Her cells have resulted in major medical advances. Some of the discoveries have been quite lucrative, yet Henrietta’s family has not received any financial benefit and have, themselves, lived in poverty. These facts bring forward many ethical and legal questions surrounding the use of the cells and to what extent, if any, should the family of Henrietta Lacks be compensated. Compensating the family of Henrietta Lacks is not legally required and problematic as a policy decision, so public recognition of Henrietta’s contribution would be sufficient and appropriate compensation.
It would be inaccurate to assume that other people are exploiting and profiting exclusively from Henrietta Lacks’ cells. Typically discoveries require the study of specimens from thousands of people over many years, and the donor’s names are not noted. Since source information has been removed from samples, it would be nearly impossible to single out the impact of one person’s contributions. There is this sense that others profited directly from Henrietta Lack, and therefore her family is due some compensation. According to David Kroll in his article Ethical Justice, But No Financial Rewards, For The Henrietta Lacks Family, George Grey, the original researcher, virtually gave away all the HeLa cells he grew and the cells that do exist are in a non-profit cell bank called the American Type Culture Collection. It does not appear that Dr. Grey profited from Henrietta’s cells as he was reported to be in financial stress at times during his life. The ATCC sells the HeLa cells at a cost that covers their personnel, maintenance and storage costs. According to Kroll, . . . their pricing is not opportunistic. The HeLa cells are also involved in the development of several drugs, which are all arguably profitable. But as Kroll points out, it is not exclusively the HeLa genes that create these products. . . . the human ingenuity added to each derivative HeLa cell line comes from someone else who holds patents on those technologies. It is this sense of justice or fairness which might cause one to consider providing financial benefits to the Lacks family. However, it does not appear fair or just to provide financial benefit to the Lacks family when so many others have made a similar contribution to the medical community under the same, or possibly even worse financial conditions.
It does not appear that Henrietta Lacks’ family would be eligible for compensation based on a property right. Robert Truog poses an interesting question about the issue in his article Paying tissue donors: The legacy of Henrietta Lacks. His question is, Do patients have a right to demand payment for their tissue? One rationale supporting this position is that patients own their tissues. If so, then taking them without permission or payment is theft. This question appears to be answered by case law. As Truog wrote in his paper the issue was addressed in the courts in 1990 in Moore v. Regents of the University of California. John Moore had his spleen removed and years later he learned that his physician had developed a financially lucrative cell line from this tissue. In 1990, the California Supreme Court decided that Moore did not have a property interest in his cells. As it appears that Henrietta did not own her own tissue, there are no rights for payment for loss of property.
Henrietta Lack did not provide informed consent for the use of her cells, but that would not necessitate compensation. Henrietta Lacks’ cells were collected and passed along for research without her consent and her descendants were completely unaware that her cells were still being used until the mid 1970’s. Robert Truog explains in his article, Even if patients lack property rights in their tissues, they do have common law right against battery that would preclude investigators from removing tissue from their bodies and using it without their consent. Individuals may therefore demand payment for permission to remove their tissues. Truog continues by stating, . . . it is well settled that tissues may not be removed from patients’ bodies without their consent. Therefore, we believe that when payment is permitted, it is in exchange for permission to remove the tissue, not payment for the tissue itself. Some believe that the Lacks family should receive some compensation because Henrietta’s cells were collected and used for research without her consent. However, it is important to understand that in the 1950’s it was common practice to take tissue and utilize it for medical research without the patient’s consent. In current society, failure to provide someone the opportunity to provide consent might result in compensatory damages but it would be unfair and inappropriate to apply today’s standards to the ethical practices of 1951. As David Kroll stated, The ground rules of medical ethics and human subjects consent are very, very different today than in 1951.
Henrietta Lack’s family is due respect and recognition for Henrietta’s contribution to medical science. Henrietta Lack’s story is compelling and extraordinary. In Henrietta Lack’s situation, specific extraordinary scientific developments can be attributed to her cells and this causes some to believe her family is due specific compensation. This would cause some serious legal, ethical and equity issues. Through public recognition, however, the family can receive some financial reward through paid speaking engagements. This would provide some financial compensation without creating an inequitable and unsustainable compensation process for tissue donors.