Science in Political Agendas




Hagman, Kendall

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Ethical conduct in human subjects research is primarily enforced by the federal government through regulations from agencies like the Food & Drug Administration or Department of Health and Human Services and the U.S. Congress. Throughout the 20th century, widely publicized events like the Tuskegee syphilis scandal and the diethylstilbestrol tragedy provided the impetus to create or improve research ethics regulations. However, increased regulation results in decreased probability of future triggering events from occurring; thus, the primary driver of research ethics policy is destined to fade over time. As less extreme triggering events fail to push legislators into action, research ethics policy will progress at an unacceptably slow pace. The field of bioethics has yet to establish a sustainable advocacy infrastructure meant to advance the recommendations of bioethicists in the field, but doing so is necessary to fill the void in political momentum left by extreme triggering events. Through a literature review and analysis of primary government documents, I evidence current dependence on triggering events and advocate for the creation of a new driver of progress, namely, a nonprofit research ethics advocacy organization. This entity would be able to provide proactive research ethics policy recommendations, thus allowing the federal government to better address issues in this area when triggering events do arise. Existing bioethics academic centers and professional organizations, such as the Hastings Center or the American Society for Bioethics and Humanities (ASBH), are best prepared to develop an advocacy group. Current policy stakeholders in the research ethics sphere are either institutions of higher education or medical interest groups, both of which have a broad array of interests that prevent them from regularly prioritizing improved ethics regulations in their advocacy efforts. A shift in this niche policy area is necessary in order to continue the push to improve human subjects protection policy going forward.



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