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Specimens and syncretism: reconciling science, public health, politics and personhood in research with human biological materials Open Access

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Research with human biological specimens raises a number of issues related to privacy and consent, as well as concerns about the spiritual or cultural significance of uses of the human body or its remains for scientific research. This paper addresses an array of moral concerns that have been raised regarding research with human specimens and proposes a new ethical framework for regulation of this research. The first set of issues relates to privacy concerns, which are one of the main drivers of regulation of this class of research. The current regulations governing government-funded human subjects research in the US, the Common Rule, regulate research with data or specimens only when they are linked to individual identifiers, enabling researchers to potentially identify the individual from whom the data or specimens were obtained. The second set of issues reflect non-privacy concerns about specimen research, such as individuals’ desire to control the overall disposition of their specimens, opinions about how tissue samples may embody a representation of the whole person, and the concept of respect and dignity associated with human remains. Group harms or group identity can take on special significance with regard to biological materials; and international collaborative research involving specimens gives rise to a set of distributive justice concerns. Individuals and groups may hold beliefs about quasi-spiritual significance materials derived from the human body, while sometimes simultaneously appreciating the importance of the advancement of science in the service of better health. The layers of ritual associated with uses of materials derived from the human body, and imposition of multiple layers of meaning, recall the syncretism of religious traditions. Rituals change and intermingle as they are overlaid, over time, in a set of evolving practices. Deciphering the moral significance of the rituals, both traditional and scientific, associated with use of biospecimens, is essential for understanding the claims that are made regarding individual rights and interests in specimen research. This deeper look at the multiple meanings is necessary to appropriately calibrate the oversight systems and policies that apply to research, as the current Common Rule, even after significant revisions, does not adequately address the fundamental ethical issues and tensions at stake. This paper argues for a new ethical framework for oversight of research with specimens that addresses the layers of meaning and tradition associated with uses of the human body while supporting the advancement of scientific research which holds the promise of widespread benefit.

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