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Perceptions of best practices for return of results in an international survey of psychiatric genetics researchers.

ABSTRACT: Many research sponsors and genetic researchers agree that some medically relevant genetic findings should be offered to participants. The scarcity of research specific to returning genetic results related to psychiatric disorders hinders the ability to develop ethically justified and empirically informed guidelines for responsible return of results for these conditions. We surveyed 407 psychiatric genetics researchers from 39 countries to examine their perceptions of challenges to returning individual results and views about best practices for the process of offering and returning results. Most researchers believed that disclosure of results should be delayed if a patient-participant is experiencing significant psychiatric symptoms. Respondents felt that there is little research on the impact of returning results to participants with psychiatric disorders and agreed that return of psychiatric genetics results to patient-participants may lead to discrimination by insurance companies or other third parties. Almost half of researchers believed results should be returned through a participant's treating psychiatrist, but many felt that clinicians lack knowledge about how to manage genetic research results. Most researchers thought results should be disclosed by genetic counselors or medical geneticists and in person; however, almost half also supported disclosure via telemedicine. This is the first global survey to examine the perspectives of researchers with experience working with this patient population and with these conditions. Their perspectives can help inform the development of much-needed guidelines to promote responsible return of results related to psychiatric conditions to patients with psychiatric disorders.

SUBMITTER: Lazaro-Munoz G

PROVIDER: S-EPMC7532738 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Project description:BackgroundThe return of genetics and genomics research results has been a subject of ongoing global debate. Such feedback is ethically desirable to update participants on research findings particularly those deemed clinically significant. Although there is limited literature, debate continues in African on what constitutes appropriate practice regarding the return of results for genetics and genomics research. This study explored perspectives and ethical considerations of Ugandan genomics researchers regarding the return of genetics and genomics research results.MethodsThis was a qualitative study that employed in-depth interviews. Thirty participants were purposively selected based on their expertise as genomics researchers in Uganda. Data were analysed through content analysis along the main themes of the study using a comprehensive thematic matrix, to identify common patterns arising from the narratives. NVivo software 12 was used to support data analysis.ResultsThe return of genetics and genomics research results was generally acceptable to researchers, and some indicated that they had previously returned individual or aggregate results to participants and communities. The main reasons cited for sharing research results with participants included their clinical utility, actionability and overall benefit to society. Ethical considerations for appropriate return of results included a need for effective community engagement, genetic counselling prior to disclosure of the results, adequate informed consent, and proper assessment of the implications of, or consequences of returning of results. However, the approaches to return of results were perceived as unstandardized due to the lack of appropriate regulatory frameworks.ConclusionsThe return of genetic and genomic research results is generally acceptable to researchers despite the lack of appropriate regulatory frameworks. Ethical considerations for return of genetics and genomics research results are highly divergent, hence the need for national ethical guidelines to appropriately regulate the practice.

Project description:ObjectiveOur project aims to provide: an overview of the impact of the COVID-19 pandemic on the field of mental health professionals in 23 countries;a model of recommendations for good practice and proposals for methods and digital tools to improve the well-being at work of mental health professionals and the quality of services offered during crisis and post-crisis periods;an in-depth ethics review of the assessment of the use of numerical tools for psychiatry professionals and patient support, including teleconsulting.MethodsThis is a large international survey conducted among 2,000 mental health professionals in 23 countries over a 12-month period. This survey will be based on 30 individual interviews and 20 focus group sessions, and a digital questionnaire will be sent online to 2,000 professionals based on the criteria of gender, age, professional experience, psychiatric specialty, context of work in psychiatry, and geographical location. Regarding the development of telepsychiatry during the COVID-19 pandemic, a pilot study on the use of digital tools will be carried out on 100 clients of psychiatry professionals in France and Belgium.Discussion-conclusionThis study will contribute to the co-construction of an international organization and monitoring system that takes into account psychiatric health professionals as major resources to fight against the COVID-19 pandemic and to develop efficient processes for preparing and anticipating crises by reducing psychosocial risks as much as possible. This project also aims to design tools for remote medicine and to develop the use of numerical tools for monitoring and supporting professionals and helping professionals to build the conditions for satisfactory operational work during crises and post-crisis situations, using adapted organizational methods. Our ongoing research should support professionals in the search for existing concrete solutions to cope with emergency work situations while maintaining an optimal quality of life.

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Perceptions of best practices for return of results in an international survey of psychiatric genetics researchers.

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