The blog of the 2009 – 2017 Presidential Commission for the Study of Bioethical Issues

Bioethics Commission Continues to Recognize Value of Empirical Bioethics Research

In its recent report, Anticipate and Communicate: Ethical Management of Incidental and Secondary Findings in the Clinical, Research, and Direct-to-Consumer Contexts, the Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) emphasized once more the importance of empirical research to support sound policy.  Specifically, the Bioethics Commission recommended that federal agencies and other interested parties support research concerning incidental and secondary findings, including types of findings, potential consequences of responding to findings, and stakeholder preferences regarding such findings (Recommendation 3).

The Bioethics Commission has made similar calls for empirical research in past reports.  For example, in Privacy and Progress in Whole Genome Sequencing, the Bioethics Commission recommended that funders of whole genome sequencing research support the evaluation of proposed frameworks for returning research results (Recommendation 3.4).  And, in Moral Science: Protecting Participants in Human Subjects Research, the Bioethics Commission called more broadly for improved accountability through research to determine whether current policies meet their intended goals.  The Bioethics Commission recommended expanded government support of research to assess the effectiveness of human subjects protections and to address other related ethical and social considerations (Recommendation 2).

As the Bioethics Commission has explained, “[t]he need for empirical research in bioethics is well established.  Descriptive data can inform and test normative work in bioethics.  It amplifies the force of conceptual bioethics activity . . . by enabling such work to more closely map onto real-world situations and provide concrete solutions and recommendations.”  (Moral Science, p. 54)  Empirical and conceptual bioethics both play important roles in informing one another and strengthening policy development.

Empirical bioethics research is growing, and stakeholders are responding directly to the Bioethics Commission’s recommendations.  For example, on its Office of Science Policy website, the National Institutes of Health lists awards it has funded in support the Moral Science recommendation.  In addition, the Bioethics Commission has made available data to support empirical bioethics scholarship: the Human Subjects Research Landscape Project – Analysis Dataset, comprising project-level data about federally supported human subjects research from 2006-2010, and the Guatemala Subject Data Spreadsheet, which includes information about the 1940s STD research subjects in Guatemala.

The Bioethics Commission is eager to learn about empirical work undertaken in response to its recommendations and additional scholarship based on its publicly available databases.  If you are engaging in such work, please e-mail and let us know.

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This is a space for the members and staff of the 2009 -2017 Presidential Commission for the Study of Bioethical Issues to communicate with the public about the work of the commission and to discuss important issues in bioethics.

As of January 15th, 2017 this blog will no longer be updated but continues to be available as an archive of the work of the 2009-2017 Presidential Commission for the Study of Bioethical Issues

Learn more about the 2009 - 2017 Presidential Commission for the Study of Bioethical Issues.