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The informed consent process for genetic testing does not commonly address preferences regarding disclosure of results in the event of the patient's death. Adults being tested for familial colorectal cancer were asked whether they want their exome sequencing results disclosed to another person in the event of their death prior to receiving the results. Of 78 participants, 92% designated an individual and 8% declined to. Further research will help refine practices for informed consent. [ABSTRACT FROM AUTHOR]

Background: To promote effective genome-scale research, genomic and clinical data for large population samples must be collected, stored, and shared. Methods: We conducted focus groups with 45 members of a Seattle-based integrated health care delivery system to learn about their views and expectations for informed consent in genome-scale studies. Results: Participants viewed information about study purpose, aims, and how and by whom study data could be used to be at least as important as information about risks and possible harms. They generally supported a tiered consent approach for specific issues, including research purpose, data sharing, and access to individual research results. Participants expressed a continuum of opinions with respect to the acceptability of broad consent, ranging from completely acceptable to completely unacceptable. Older participants were more likely to view the consent process in relational—rather than contractual—terms, compared with younger participants. The majority of participants endorsed seeking study subjects’ permission regarding material changes in study purpose and data sharing. Conclusions: Although this study sample was limited in terms of racial and socioeconomic diversity, our results suggest a strong positive interest in genomic research on the part of at least some prospective participants and indicate a need for increased public engagement as well as strategies for ongoing communication with study participants. [ABSTRACT FROM PUBLISHER]

Investigates the rare prostate cancer (PC)-susceptibility locus at chromosome 1p36 of patients in Seattle, Washington. Analysis of prostate tumor; Characteristics of patients with PC and history of brain cancer; Discussion on the genomewide screen; Concept of 1p36 region.