Human Subjects & Biomedical Research Video
World Stem Cell Summit Conference Video: Sugarman, J., Zoloth, L. & Hempel, C. October 4 2010. FullviewMedia. The Immortal Life of Henrietta Lacks - lessons for stem cell researchers and patients. World Stem Cell Summit, Pasadena, CA. Retrieved January 1, 2011 Detroit, Michigan. Moderator: Edward Goldman, U of Michigan School of Public Health. Speakers: Jeremy Sugarman, John Hopkins University; Laurie Zoloth, Northwestern University, Feinberg School of Medicine; Chris Hempel, Addi & Cassi Fund. Site requires free registration. Link
Synopsis of the one hour video: The video captures the plenary session for the World Stem Cell Summit focused on the history and future of human subjects research in the context of stem cell research. The first 10 minutes includes introduction of the speakers and the case of the genomic studies conducted on the deceased Havusupai Native Americans. In addition, the three speakers represent very different views regarding the historical case study of Henrietta Lacks and the derivation of the HeLa cell line. The first speaker, Jeremy Sugarman from John Hopkins University, discusses the Havusupai case, the Lacks historical case, recent memorials and symposiums recognizing the HeLa legacy, and the work of the ISCRO (Hopkins Institutional Stem Cell Research Oversight Committee) in addressing provenance and materials transfer agreements, and various state and national laws regarding cell research. He also extends to the pending decision regarding the 70 Reproductive Genetics Institute (RGI)cell lines that were rejected by the Federal Registry because of exculpatory language regarding patents based on research and he elaborates on the creation of humans with induced pluripotent stem cells that become egg and sperm (10'-31'). The second speaker, Laurie Zoloth, suggests that the field of bioethics should expand to go beyond the four basic principles of beneficence, maleficence, autonomy, and justice and to include the role of fidelity; that patients should be loyal to the research goal as long as researchers are loyal to the needs of the patient, or the interests of the human research subject. She also compares the case of Henrietta Lacks to Jimmy Sarkett , the latter an impoverished farm boy living with polio whose cells became the type III polio vaccine that Salk developed. She concludes that the difference is based on the presence or lack of a marketplace in each of the respective cases. She challenges the notion that the donor in the process of "giving" and "gifting" is left without power or agency. She suggests that the vision and aspiration of medicine were hijacked by "bad medicine" such as the syphilis studies conducted in Guatemala underwritten by the US Public Health Service and the reaction to studies conducted by Nazi doctors resulting in the Nuremberg Code. She asks us to consider "What are our bodies for?" Is there a duty to serve the other? She evokes religious beliefs to argue for the notion that the doctor has a debt to the patient, and fidelity is the better way to describe the relationship between the doctor and patient as it reflects duty and altruism and places this above autonomy. Zoloth, mother of a disabled child, would give her left arm to identify a treatment for her child and claims that if Henrietta Lacks knew that her cells prevented her children and countless others from contracting polio she would "not want a cent." She suggests that Henrietta's religious beliefs would be in line with this approach. (31-51') The third speaker,Chris Hempel, represents the parents of pediatric patients, and she uses very interesting language that mimics that of the Skloot narrative of Henrietta Lacks in that she, her husband, and her children (patients of the autosomal recessive Neeman Pick Disease) have "donated" their cells to develop induced pluripotent stem cells and also to generate mice that carry their autosomal genetic variants in an effort to produce mice that would represent their genetically homozygous children. The ways in which she describes these cells and model organisms is through very humanistic language. The upshot is that people want to "donate" or gift their cells as long as there is complete transparency and attention to justice (51-1:07').