Incidental Findings ? THE DUTY TO RESCUE IN GENOMIC RESEARCH

نویسندگان

  • Michael Ulrich
  • Maria W. Merritt
  • Holly A. Taylor
  • Luke C. Mullany
چکیده

Gliwa et al. (2012) focus their analysis of researcher obligations for incidental findings in genomic research on three criteria: (1) the benefit to the research participant, which requires strong associations with severe disease that has medical actionability; (2) unique access to the information and analysis; and (3) the burden that looking and returning incidental findings places on the researcher. While the authors adopt the ancillary care framework to analyze requirements to return incidental findings, I believe the duty to rescue presents several advantages while preserving those benefits found in the ancillary care model. First, utilizing the duty to rescue avoids conflating the return of genetic information with providing needed clinical care. Second, a rescue–based approach recognizes the ethical duties researchers have toward the research study and offers a mechanism for appropriately balancing these with obligations to individual subjects. Finally, using the duty to rescue as the ethical underpinning for incidental finding obligations answers definitively that there is no duty to search for incidental findings. The duty to rescue has been underanalyzed and relatively unexplored in recent debates on research ethics (Merritt, Taylor, and Mullany 2010). In terms of the incidental findings quandary, the duty to rescue model requires disclosure when a researcher discovers genetic information that indicates a risk of significant harm that they are in a position to mitigate with little risk to the overall research study. While there are some similarities between this approach and one anchored in the ancillary care framework, the duty to rescue presents a more definitive answer in what must be returned. For example, the authors contend that duties of ancillary care in genomic research relate to information that is medically beneficial rather than increasing knowledge or awareness (Gliwa et al. 2012). Yet, under an ancillary care analysis others have determined researchers are required to return incidental findings the subject is likely to believe

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تاریخ انتشار 2013