Researchers’ views on return of incidental genomic research results: qualitative and quantitative findings

Purpose: Comprehensive genomic analysis including exome and genome sequencing is increasingly being utilized in research studies, leading to the generation of incidental genetic findings. It is unclear how researchers plan to deal with incidental genetic findings. Methods: We conducted a survey of the practices and attitudes of 234 members of the US genetic research community and performed qualitative semistructured interviews with 28 genomic researchers to understand their views and experiences with incidental genetic research findings. Results: We found that 12% of the researchers had returned incidental genetic findings, and an additional 28% planned to do so. A large majority of researchers (95%) believe that incidental findings for highly penetrant disorders with immediate medical implications should be offered to research participants. However, there was no consensus on returning incidental results for other conditions varying in penetrance and medical actionability. Researchers raised concerns that the return of incidental findings would impose significant burdens on research and could potentially have deleterious effects on research participants if not performed well. Researchers identified assistance needed to enable effective, accurate return of incidental findings. Conclusion: The majority of the researchers believe that research participants should have the option to receive at least some incidental genetic research results

Processes and factors involved in decisions regarding return of incidental genomic findings in research

Purpose: Studies have begun exploring whether researchers should return incidental findings in genomic studies, and if so, which findings should be returned; however, how researchers make these decisions—the processes and factors involved—has remained largely unexplored. Methods: We interviewed 28 genomics researchers in-depth about their experiences and views concerning the return of incidental findings. Results: Researchers often struggle with questions concerning which incidental findings to return and how to make those decisions. Multiple factors shape their views, including information about the gene variant (e.g., pathogenicity and disease characteristics), concerns about participants’ well-being and researcher responsibility, and input from external entities. Researchers weigh the evidence, yet they face conflicting pressures, with relevant data frequently being unavailable. Researchers vary in who they believe should decide: participants, principal investigators, institutional review boards, and/or professional organizations. Contextual factors can influence these decisions, including policies governing return of results by institutions and biobanks and the study design. Researchers vary in desires for: guidance from institutions and professional organizations, changes to current institutional processes, and community-wide genetics education. Conclusion: These data, the first to examine the processes by which researchers make decisions regarding the return of genetic incidental findings, highlight several complexities involved and have important implications for future genetics research, policy, and examinations of these issues

Terrorism Beyond the Mountains: The Historical and Political Construction of the Indigenous Identity Through Political Activism

Peruvian history has been fraught with discordance between urban, non-indigenous\ud institutions of power and the nation’s indigenous population. Using a variety of theoretical\ud approaches, members of the elite have grappled with the “Indigenous question”, to use the\ud term coined by Carlos Mariategui, one of Peru’s most celebrated intellectuals. Elite nonindigenous\ud approach to the indigenous question has resulted in a flawed and deeply\ud prejudiced construction of the indigenous identity that has been manipulated by institutions\ud for social, economic and political purposes. Despite being portrayed as a subaltern ossified in\ud time, indigenous communities have responded to institutional constructions of ‘the\ud indigenous’ by formulating their own group identity through political mobilization. Two\ud recent events that triggered indigenous activism, the Internal Conflict of the 1980’s and\ud 1990’s and the development of the Amazon as a result of Free Trade in 2009, have been\ud poignant moments of contestation to institutions and of self-assertion as valuable citizens of\ud the nation. These two events demonstrate the progress of indigenous collective action and the\ud growing role of indigenous communities in the nation’s tentative development as a\ud democracy