The ethical principle of justice requires that the benefits and burdens of research are equally distributed across populations, yet minorities and women are still underrepresented in research, particularly in trials related to cancer outcomes and in genetic studies. Data recently collected by the investigative team among nearly 400 educated, professional, African American women, a demographic that is understudied yet well-positioned to promote and engage in research, demonstrated that only 52% believed research conducted in the U.S. is ethical, 38% had ever been a participant in a health-related research study and 22% sought out a research opportunity on their own. Furthermore, more women were willing to participate in a genetic study than in a medical record review study or a clinical trial and the percentage of women "not at all willing" to participate was the same for a clinical trial a for a medical record review study. These are compelling findings that require greater insight if we are to develop programs to increase participation in a variety of types of research studies among minority women. The proposed study leverages a partnership between Mayo Clinic and The Links, Incorporated, a professional, African American women's volunteer service organization with national reach.
The aims are to: (1) understand specific ethical concerns related to participation in cancer prevention and treatment trials, genetic studies, and research involving medical record review, and identify gaps in knowledge regarding the regulations designed to protect human research subjects;(2) identify acceptable web-based approaches to providing education and information about research participation that are culturally tailored, understandable, and feasible to disseminate broadly;and (3) to develop and pilot-test an "education-to-action" web-based program among selected Links Chapters, assessing changes in knowledge and attitudes related to ethical standards in research and measuring behavioral intention to participate in research, actual registration as a volunteer in the ResearchMatch registry, and self-reported peer-to-peer discussion of research volunteerism.
These aims will be accomplished by using qualitative (Aims 1 and 2) and quantitative (Aim 3) research methodologies involving 325 African American adult women and by leveraging the expertise, membership and organizational structure of The Links, Inc., to ultimately arrive at a novel, web-based program that demonstrates feasibility and success in decreasing ethical concerns about research participation among African American women and improving knowledge and understanding with regard to identifying appropriate clinical research opportunities.
This research will elucidate ethical concerns among African American women that underlie disparities in participation in clinical trials, genetic studies, and research involving medical record review and test the feasibility of a novel, empirically-derived, culturally-tailored web-based education-to-action program. Developing a program designed to instill trust, increase the perceived value of a variety of types of research studies, and increase the representation of minority women as research volunteers has important implications for improving the integrity of science and addressing the ethical principle of justice.