The expectations for researchers are rapidly changing. Consensus is building among stakeholders, for instance, that research results that can benefit participants and their families should be returned to them, because of the important health and reproductive predispositions that genomic information may reveal (Henderson et al., 2012). Some scholars have argued that there will be greater demand among research participants who believe they have a right to access the information in their genomes (Henderson et al., 2008; McGuire et al., 2011). Research has also shown that members of the public have privacy preferences that are out of tune with long standing privacy policies applied to research (McGuire et al., 2008, 2011; McGuire and Beskow, 2010; McGuire and Lupski, 2010). Increasingly, participants are favoring more restrictive data release/sharing options, and at higher rates—in one study, nearly half (47%: McGuire et al., 2011) of the participants selected to release their data on a restricted basis.
