“Losing Trust/Regaining Trust” by Kim Juhas

The Immortal Life of Henrietta Lacks tells the story of a poor young African American woman named Henrietta Lacks, whose tumor in her cervix was removed, unknown to her and her family, and used to create the first cell culture able to survive and divide outside of the human body.  This cell culture gave scientists insight into how cells behaved, including how they fought viruses and contained DNA.  Henrietta’s cells, called HeLa by the scientific community, were the foundation for several medical advances, including the polio and human papillomavirus (HPV) vaccines, and gene mapping.  The cells are still used in laboratories around the world.

            In 1951, when Henrietta had her surgery at Johns Hopkins Hospital, she was not asked for permission to donate cells to researchers.  The tumor was acquired by George Gey, who was able to use HeLa to create the first immortal cell line.  The cells had a unique ability to not only divide outside of the human body in cell culture (a liquid filled with nutrients that allow cells to survive) but the cells divided at an extraordinarily rapid rate.  Soon the cells were shipped to laboratories around the world for scientists to use in their own experiments. 

            Two decades passed after Henrietta’s death before her family discovered that her cells were a fundamental instrument for medical research.  Yet, when The Immortal Life of Henrietta Lacks was published in 2010, her family was still unable to afford health care.  The author, Rebecca Skloot, tells the personal story of Henrietta and her family members, including their difficulties interacting with the media and medical communities, and their emotional difficulties processing the fact that part of their mother’s body was still alive. 

            Skloot’s book highlights the injustices of research on African Americans, including the Tuskeegee syphilis experiment and Johns Hopkins’ research exposing African American children to lead.  She also tells the story of Dr. Chester Southam, who injected HeLa cells (cancer cells) into over 600 patients, stating to some that he was testing them for cancer, and to others that he was testing their immune systems.  His medical license was suspended when three Jewish doctors made his procedures public, as they felt the ethical violations were similar to those performed by the Nazis on Jewish prisoners.  Dr. Southam’s investigation led to the National Institutes of Health’s demand for informed consent for research on human subjects.

 Countless times while reading The Immortal Life of Henrietta Lacks, I found myself shaking my head in disbelief.  How could doctors at Johns Hopkins Hospital not tell Henrietta or her family that they took her cells to use for research, and then later publish her name along with her genetic information?  How could a doctor inject her cancer cells into unknowing patients and only tell them he was testing their immune systems? 

            This book outlines the many reasons informed consent is a necessary part of the research process.  It also shows that there is a history of unjust treatment of the poor and minorities, and that there are people who, because of this history, do not trust the research process.  This lack of trust is clear as Bobette Lacks, Henrietta’s daughter-in-law, recounted the belief, shared by many in the local community, that Johns Hopkins was rumored to abduct African Americans in order to conduct research on them. 

            Researchers and people who benefit from research need to re-educate the general public about the new regulations that have been put in place to protect research participants.  It is no longer possible for someone like Chester Southam to inject cancer cells into an unknowing patient.  But does everyone know this?  Or do people still believe stories like Bobette’s? 

            As someone who has worked as a research assistant with poor and minority participants, I see how important it is to forge trusting relationships, and to demonstrate that research is not only beneficial to the researchers, but to the participants.  It is important to explain to participants the reasons for a particular study, the risks of participating, and what knowledge will be gained from it.  It is necessary to treat participants as human beings and valuable sources of knowledge, not just as statistics. 

  It is going to take more work and time to educate people that circumstances are different and mechanisms such as Institutional Review Boards and informed consent are in place to protect participants from unethical practices.  It is important for research results to be generalized to as many people as possible, and therefore, it is worth the extra effort to educate possible research participants.  It is only through this effort to help regain trust that we can feel confident in knowing that research findings truly represent people of as many races, ethnicities, and socioeconomic backgrounds as possible.