Abstract
Scientific and policy debates on the issue of disclosing research results and incidental findings to participants have evolved over time. Scientific advances, including the continued refinement of whole genome and exome sequencing techniques, have helped this issue to maintain momentum. However, scientific inquiry, policy debates, and normative activity in this area have focused primarily on the genetic/genomic research and clinical contexts, which only to a certain extent are suitable for extrapolation to the stem cell field. While aware of the risks of falling into an exceptionalistic view, it is maintained that the particular complexities of stem cell research and banking warrant special consideration. To that end, recently adopted stem cell-specific policy guidance seeks to acknowledge that the vast range of pluripotent stem cell research related studies and the diversity of banking initiatives—in which pluripotent stem cell lines are continuously immortalized, transformed, and distributed, are important factors to consider when drafting protocols for authenticating, disclosing, and managing research and incidental findings. In this chapter, we will provide an overview of stem cell-specific policy recommendations addressing the scientific, ethical, and legal implications of mandating the disclosure of individual research results, including incidental findings.