Despite increased efforts to ensure diversity in genomic research, the exclusion of minority groups from data analyses and publications remains a critical issue. This paper addresses the ethical implications of these exclusions and proposes accountability for reasonableness (A4R) as a framework to promote fairness and equity in research. Originally conceived by Norman Daniels and James Sabin to guide resource allocation in the context of health policy, A4R emphasizes publicity, relevance of reasons, enforcement, and revision as essential for legitimacy and trust in the decision-making process. The authors argue that A4R is also relevant to resource allocation in research and that, if adequately informed and incentivized by funding agencies, institutional review boards, and scientific journals, researchers are well-positioned to assess data-selection justifications. The A4R framework provides a promising foundation for fostering accountability in genomics and other fields, including artificial intelligence, where lack of diversity and pervasive biases threaten equitable benefit sharing.
Keywords: A4R; accountability for reasonableness; diversity; equity and fairness; exclusion; genomic research; procedural justice; research ethics.
© 2024 The Author(s). Hastings Center Report published by Wiley Periodicals LLC on behalf of The Hastings Center.