First Bioethics Conference on Cancer Health Disparities Research: Celebrating Sch

Sodeke, Stephen

Abstract

In 2005, Morehouse School of Medicine, Tuskegee University, and University of Alabama at Birmingham, three schools with different institutional cultures, characters, and resources agreed to collaborate in efforts to eliminate the gap in cancer burden. Pursuing this laudable aim predictably involved some communication challenges. The Partnership is made up of eight components: (1) Scientific Research, (2) Research Training and Career Development, (3) Cancer Education, (4) Community Outreach, (5) Recruitment, and (6) Evaluation, (7) Biostatistics, and (8) Bioethics. Biostatistics and Bioethics served as shared resources within the Partnership. Guided by the ethical and bioethical expertise and conscience of the Tuskegee University National Center for Bioethics in Research and Health Care, the Bioethics Shared Resource (BESR) has been instrumental in helping the Partnership endure and progress through its growing pains (Sodeke, Turner, and Tarver 2010). Because of such a record, the Partnership's Program Steering Committee and the Project Officer at NCI strongly encouraged the BESR group to host a national conference, designed to assist others in addressing the ethical issues that cancer health disparities research raise. To this end, we respond to PA-10- 071 NIH R13 Support for Conferences and Scientific Meetings.
The specific aims of the First Bioethics Conference on Cancer Health Disparities Research to be held at Tuskegee in January 2012 are: (1) Broaden participants'understanding of ethical issues specific to cancer health disparities research, (2) Demonstrate awareness of various stakeholders and perspectives impacting resolution of the ethical issues, (3) Gain a better understanding of how cancer health disparities research can be ethically conducted to eliminate disparities with due attention to contextual issues, individual interest, and entrenched community values, and (4) Plan to engage the knowledge and transforming experience gained to eliminate cancer health disparities in home institutions or new environments. Attendees will be engaged in experimental and experiential learning with the opportunity to present their experimental work and interact with peers to sort out the ethical issues raised by such work in a supportive environment. To engage the emotions and stimulate various ethical perspectives of the attendees, we will use a theatrical act of the life and connectedness of Henrietta Lacks performed by two professional actresses;and a HeLa Cell Exhibit to be designed and mounted by the Legacy Museum of Tuskegee University, followed by facilitated deep reflections and ethical analyses. We expect these immersion experiences to be transformative for participants, such that their increased sensitivity to the plight of others can inform their plans for improved moral judgments pertaining to ethical issues in cancer health disparities research. We plan to publish the proceedings of the conference in a professional journal such as the Journal of Health Care for the Poor and Underserved.

Public Health Relevance

Research in cancer health disparities raises many ethical issues researchers must address in efforts to eliminate the disparities. Creative methods that are responsive to issues of race, ethnicity, gender, class, and spirituality of research participans as well as those of investigators, are required to understand and resolve relevant ethical issues. The proposed Bioethics Conference immersion experiences will likely result in increased sensitivity to the plight of others, and can inform attendees'plans for improved moral judgments as they do their work in new environments or home institutions.