A ncillary Care in Community-Based Research: Deciding What to Do
The goal of the proposed 4-year interdisciplinary multi-method project is to establish an empirically informed normative account of researchers’ obligations to provide ancillary care in community-based research in low-resource settings. Ancillary care (AC) is defined as health care needed by research subjects, but not necessary for safety or scientific validity. In community-based research, by contrast with facility-based research conducted in a clinic or hospital setting, semi-skilled local study workers often carry out research activities in people’s homes and other functional living spaces. Host communities in low-resource settings may lack adequate nutrition, clean water, sanitation, and basic preventive and therapeutic health services. Our preliminary study indicates that researchers often encounter serious and sometimes desperate unmet health needs in their interactions with subjects. Such situations present a perplexing ethical challenge as researchers must decide what to do. To what extent do researchers have an ethical obligation to provide AC? The NIH identifies AC as an important issue in international research ethics, and calls for research to assess how stakeholders respond to requirements or requests to provide it (PA-07-277).There is a lack of empirical data on the extent to which researchers actually provide AC, and how they decide whether to do so. The existing normative model of AC fails to consider community-based research, as it assumes that research occurs in clinical facilities. In this project, a social scientist, a moral philosopher, and a public health scientist active in global health research will integrate empirical data collection with philosophical analysis to accomplish three specific aims: (1) describe the AC decision-making experience of researchers who conduct both community-based and facility-based health research in low and high functioning health systems in low-resource settings; (2) identify the relationships between and associations among factors that predict provision of AC in low-resource settings, determine if and how these differ between community-based and facility-based research and between low and high functioning health system settings, and refine a descriptive conceptual model based on preliminary findings; and (3) develop and refine a normative model of researchers’ AC obligations focused specifically on community-based research in low-resource settings. Aims 1 and 2 will be accomplished by conducting a quantitative survey. Aim 3 will be accomplished by using standard philosophical methods to develop and systematically test candidate normative models. The broad, long-term objective of the proposed project is to help researchers make socially responsible decisions when faced with AC needs in community-based research.