The promise of large-scale cancer genomics research and its translation to clinical settings can only be achieved with the support and involvement of the public. Patients represent one group of research volunteers needed for cancer genomics research. Trust in physicians and medical research has been identified as an important ingredient in risk assessments of genetic research. In recent years, there has been a growing debate about social obligations to participate in genetic research that may benefit the public. However, it is not yet clear how the experience of cancer affects beliefs about research obligations, or how these beliefs-along with trust in physicians and medical research-affect attitudes toward cancer genomics research. The empirical goal of this study is to describe the effect of being a colon cancer patient, compared to being a patient without a cancer history, on attitudes toward cancer genomics research and willingness to participate in genomics research. An important aim of this study is to assess the mediating effects of trust and beliefs about social obligations for research participation on patient attitudes. The normative goal of this study is to explore the ethical implications of this assessment and develop points to consider in recommendations for the design of cancer genomic studies and recruitment protocols. The proposed study will employ a mixed methods approach, using quantitative and qualitative methodologies to examine trust and social obligation as mediating factors in positive attitudes toward cancer genomics research among colon cancer patients and patients with no history of cancer. First, a survey questionnaire will be administered to a total of 252 patients (126 patients who have had colon cancer and 126 patients with no prior history of cancer). Second, in-depth interviews will be conducted with a sub-sample of 64 individuals who completed the survey to strengthen our understanding of meanings ascribed to cancer and cancer genomics research. Finally, an ethical analysis of issues associated with trust and social obligation for the design of cancer genomics research and recruitment protocols will be conducted. This study will provide the architects of cancer genomics with an account of how the patients they hope to work with are likely to experience their invitations to participate in research. The proposed study will contribute to our understanding of normative expectations regarding trust and a social obligation to participate in research, and their implications for the design of and implementation of cancer genomics research. The proposed study is unique because, to our knowledge, it represents the first empirical investigation of the mediating effects of trust and social obligations for research participation on attitudes toward cancer genomics research among colon cancer patients and patients with no history of cancer.
The promise of genetic research on cancer can only be achieved with the support and involvement of the public. Patients represent one group of research volunteers needed for cancer genetic research. Trust in physicians and medical research has been identified as an important ingredient in risk assessments of genetic research. In recent years, there has been a growing debate about social obligations to participate in genetic research that may benefit the public. However, it is not yet clear how the experience of cancer affects beliefs about research obligations, or how these beliefs-along with trust in physicians and medical research-affect attitudes toward cancer genomics research. The goal of this study is to describe the effect of being a colon cancer patient, compared to being a patient without a cancer history, on attitudes toward cancer genomics research and willingness to participate in genomics research. This study will examine the influence of trust and beliefs about social obligations for research participation on patient attitudes. This study will also explore ethical implications of issues associated with trust and social obligation, and develop points to consider in recommendations for cancer genomic studies and recruitment protocols.
| Marshall, Patricia A; Adebamowo, Clement A; Adeyemo, Adebowale A et al. (2014) Voluntary participation and comprehension of informed consent in a genetic epidemiological study of breast cancer in Nigeria. BMC Med Ethics 15:38 |
| Marshall, Patricia A (2008) ""Cultural competence"" and informed consent in international health research. Camb Q Healthc Ethics 17:206-15 |
| Marshall, Patricia A; Adebamowo, Clement A; Adeyemo, Adebowale A et al. (2006) Voluntary participation and informed consent to international genetic research. Am J Public Health 96:1989-95 |
| Sankar, Pamela; Cho, Mildred K; Condit, Celeste M et al. (2004) Genetic research and health disparities. JAMA 291:2985-9 |
| Marshall, P A; Rotimi, C (2001) Ethical challenges in community-based research. Am J Med Sci 322:259-63 |
| Marshall, P A; Rotimi, C (2001) Ethical challenges in community-based research. Am J Med Sci 322:241-5 |
