Posted on August 7, 2014 at 11:38 AM
The Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) advises the President as issues arise from advances in biomedicine and related areas of science and technology. It seeks to identify and promote policies and practices that ensure scientific research, health care delivery, and technological innovation are conducted in a socially and ethically responsible manner. It is a source of expert analysis and advice, but the Bioethics Commission does not make or enforce policies or laws related to bioethics. While the Commission may offer, and has offered, advice to U.S. agencies on how to administer, review, or oversee federal grants, it does not provide or oversee any grants or accompanying program activities or direct funding priorities. Since 2009 the Bioethics Commission has provided guidance based on thorough ethical analysis for topics such as genomics, research with human subjects, incidental and secondary findings, and most recently neuroscience. In addition, the Bioethics Commission is committed to creating educational resources, such as modules and primers, to accompany its reports in order to further support bioethics education.
Its position as a presidential commission is supported by a directive from the President to federal agencies to help the Bioethics Commission as needed. The Executive Order establishing the Commission states: “All executive departments and agencies and all entities within the Executive Office of the President shall provide information and assistance to the Commission as the Chair may request for purposes of carrying out the Commission’s functions, to the extent permitted by law.”
The support of this directive was critical to the Bioethics Commission as it sought to answer President Obama’s question about whether current federal regulations adequately protect participants in federally supported scientific studies (Moral Science: Protecting Participants in Human Subjects Research, 2011). The Commission quickly learned that there is no complete source of basic information, such as level of funding, number of studies or participants, or geographic location, about the government’s research involving human subjects. The Commission therefore requested that information from the 18 agencies that conduct most federal human subjects research. The Commission learned that many federal departments and agencies have no ready means to provide basic information about the research they fund.
As a result, the Bioethics Commission recommended that each department or agency that supports human subjects research should make publicly available a core set of data elements for their human subjects research projects through their own or a trans-agency database system. It also recommended that the Office for Human Research Protections or another designated central organizing agency should support and administer a central web-based portal linking to each departmental or agency system, thus increasing transparency and accountability in human subjects research.
Practical policy recommendations such as these, based on sound ethical principles, are what the Bioethics Commission strives to provide. Its recommendations are informed by empirical and conceptual research, public comment, and public meetings. The Commission is required to hold at least four public meetings a year; these meetings are held in various locations across the nation, and bring Commission Members and subject-matter experts together for presentations and deliberation. These sessions play an integral role in shaping the Bioethics Commission’s reports. Once a consensus among members has been reached, the Commission then publishes its analysis and ultimate recommendations in reports it shares with the President.
The Bioethics Commission is guided by a commitment to critically examine and explore diverse perspectives, and to engage and educate the public on bioethics issues to advance ethically responsible practices and policies. For more information on the Commission visit our website. All meeting webcasts and transcripts, final reports, and related educational materials are publicly available free of charge at www.bioethics.gov. Public meetings are webcast live and archived; the next public meeting will be held on Aug. 20in Washington, D.C.