Michigan State University College of Law
While there has been a seemingly endless debate over whether individual results should be disclosed in genomic research, the role that resources should play in determining a researcher's duty has been left unanswered. This commentary fills this void by fully examining how resource limitations constrain a researcher's duty to disclose. This paper is the first to anchor an obligation in the duty to rescue alone, and as a result, the first to find not only an ethical floor of what must be returned, but also a ceiling of the amount of resources that may be utilized to fulfill this duty. The traditional ethical research framework maintains that the purpose of research is to pursue generalizable knowledge that will benefit society. As such, researchers have a duty to complete their study protocol. To protect this ethical obligation, the duty to rescue prohibits a researcher from committing enough resources to disclosing individual results in such a way that the study cannot be completed. Meanwhile, the duty to rescue requires a researcher to disclose individual results when there is a harm that can be mitigated without jeopardizing the study that the subjects have undergone risks to complete. Therefore, the duty to rescue incorporates resource limitations by appropriately balancing the purpose of research and the need to protect those subjects who enroll.
Michael R. Ulrich,
Resource Restraints: Rethinking Disclosure of Individual Genomic Findings,
Michigan State University Journal of Medicine and Law
Available at: https://scholarship.law.bu.edu/faculty_scholarship/1196