Introduction

The manuscripts in this Supplemental Issue of the Journal of Health Care for the Poor and the Underserved are from the First Bioethics Conference on Cancer Health Disparities Research held at Tuskegee University in Tuskegee, Alabama from January 18 to 20, 2012. This conference was based on our belief that cancer health disparities are a bioethics issue because they reflect an injustice due to the unequal burden of suffering and cancer deaths in minority populations.¹ Because bioethics is a life-affirming field, issues of disparities in health and wellbeing, justice, and equity are of serious concern, as highlighted in various reports.^2,3,4

We are confident that scientific researchers are hard at work and their progress must be celebrated, but their research efforts in cancer health disparities raise many ethical issues that must be addressed. Therefore, the Bioethics Shared Resource Core of the Morehouse School of Medicine/Tuskegee University/University of Alabama at Birmingham Comprehensive Cancer Center Partnership recognized the need to collaborate with the research community to create the necessary reflective space and organize a program that could make this possible using a holistic approach. But why was a holistic approach critical? And, how did we make it happen?

We reasoned that, since issues related to cancer health disparities research are contextual and cannot be ignored, an integrative bioethics approach that is responsive to issues of the race, ethnicity, gender, class, and spirituality of research participants as well as those of the investigators is required to address relevant issues. Such a holistic approach welcomes and accords credibility to different ways of thinking, knowing, experiencing, and understanding the interconnectedness of all stakeholders in cancer health matters affecting personal and community well-being. Our intention was to ensure that the scientific community and those who volunteer for research could, after learning from one another in the supportive environment of the conference, perform their work according to better bioethical standards.

The conference had three parts. The first part dealt with cancer narratives and the duty not to harm. It opened with a theatrical production of the story of Henrietta Lacks by two professional actresses, Jamila Turner and Cynthia Wilson, who were supported by six Tuskegee University students. The synopsis of the play, written by Jamila Turner, is reproduced below:

HeLa*: Cellvation

Meet Henrietta Lacks! She could be your mother, your wife, your sister, your daughter, your best friend, or your neighbor. But can a person’s life be summed up in just those relationships? She could have been any one of us. Any one of us could have had her story, but we didn’t. And because of her forced contribution to society, the world has greatly benefited in terms of scientific discovery, from a better understanding of the intricacies of cancer to the development of the polio vaccine that protected millions. No one can deny the importance of the HeLa cell to the revolution taking place in modern medicine cancer, however, what about the importance of the woman whose cells we revere? The play HeLa*: Cellvation is an attempt to tell Henrietta Lacks’ story through her perspective from the time of her diagnosis to her untimely death. The play is based on Rebecca Skloot’s book, The Immortal Life of Henrietta Lacks. It is the most intimate account of Henrietta’s life, as it is derived from accounts of her family and friends. This play is dedicated to humanizing her in a way that allows the audience to venture beyond the cells, which have made her known around the world as the immortal cancer cells known as “HeLa.” Henrietta’s story raises questions about the ethics of the acquisition, without consent, of human biological samples for use in research. Sit back and expand your focus from a single cell to clearly see a living, breathing person; a woman that loved and was loved, a woman that respected and was respected. Then, and only then, you will be able to experience the real Henrietta Lacks.

(Jamila Turner)

The discussion of bioethical issues was facilitated by Dr. Roland Pattilo, Professor of Gynecological Oncology, Morehouse School of Medicine in Atlanta...