Return of research results (RoRR) to the healthy CHRIS cohort: designing a policy with the participants

Staunton, Ciara ORCID: https://orcid.org/0000-0002-3185-440X, Kösters, Maria, Pramstaller, Peter P. ORCID: https://orcid.org/0000-0002-9831-8302 and Mascalzoni, Deborah ORCID: https://orcid.org/0000-0003-4156-1464 (2021) Return of research results (RoRR) to the healthy CHRIS cohort: designing a policy with the participants. Journal of Community Genetics, 12 (4) . pp. 577-592. ISSN 1868-310X [Article] (doi:10.1007/s12687-021-00536-1)

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Abstract

Legal, financial and organizational challenges and the absence of coherent international guidelines and legal frameworks still discourage many genetic studies to share individual research results with their participants. Studies and institutions deciding to return genetic results will need to design their own study-specific return policy after due consideration of the ethical responsibilities. The Cooperative Health Research in South Tyrol (CHRIS) study, a healthy cohort study, did not foresee the return of individual genomic results during its baseline phase. However, as it was expected that the follow-up phase would generate an increasing amount of reliable genetic results, an update of the return of research results (RoRR) policy became necessary. To inform this revision, an empirical study using mixed methods was developed to investigate the views of CHRIS research participants (20), local general practitioners (3) and the local genetic counselling service (1). During the interviews, three different examples of potential genetic results with a very diverse potential impact on participants were presented: breast cancer, Parkinson disease and Huntington disease. The CHRIS participants also completed a short questionnaire, collecting personal information and asking for a self-evaluation of their knowledge about genetics. This study made it clear that research participants want to make autonomous decisions on the disclosure or non-disclosure of their results. While the motivations for participants' decisions were very diverse, we were able to identify several common criteria that had a strong influence on their choices. Providing information on these factors is crucial to enable participants to make truly informed decisions. [Abstract copyright: © 2021. The Author(s).]

Item Type: Article
Keywords (uncontrolled): Genetic research, Healthy cohort study, Research policy, Return of genetic research results, Unsolicited findings
Research Areas: A. > School of Law
Item ID: 33656
Notes on copyright: © The Author(s) 2021
This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder.
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Depositing User: Jisc Publications Router
Date Deposited: 26 Jul 2021 09:38
Last Modified: 01 Nov 2021 13:51
URI: https://eprints.mdx.ac.uk/id/eprint/33656

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