| 1. |
- Budin-Ljøsne, Isabelle, et al.
(författare)
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Feedback of Individual Genetic Results to Research Participants : Is It Feasible in Europe?
- 2016
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Ingår i: Biopreservation and Biobanking. - : Mary Ann Liebert Inc. - 1947-5535 .- 1947-5543. ; 14:3, s. 241-248
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: There is growing consensus that individual genetic research results that are scientifically robust, analytically valid, and clinically actionable should be offered to research participants. However, the general practice in European research projects is that results are usually not provided to research participants for many reasons. This article reports on the views of European experts and scholars who are members of the European COST Action CHIP ME IS1303 (Citizen's Health through public-private Initiatives: Public health, Market and Ethical perspectives) regarding challenges to the feedback of individual genetic results to research participants in Europe and potential strategies to address these challenges.MATERIALS AND METHODS: A consultation of the COST Action members was conducted through an email survey and a workshop. The results from the consultation were analyzed following a conventional content analysis approach.RESULTS: Legal frameworks, professional guidelines, and financial, organizational, and human resources to support the feedback of results are largely missing in Europe. Necessary steps to facilitate the feedback process include clarifying legal requirements to the feedback of results, developing harmonized European best practices, promoting interdisciplinary and cross-institutional collaboration, designing educational programs and cost-efficient IT-based platforms, involving research ethics committees, and documenting the health benefits and risks of the feedback process.CONCLUSIONS: Coordinated efforts at pan-European level are needed to enable equitable, scientifically sound, and socially robust feedback of results to research participants.
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| 2. |
- Forsberg, Joanna Stjernschantz, et al.
(författare)
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A big step for Finnish biobanking
- 2014
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Ingår i: Nature reviews genetics. - : Springer Science and Business Media LLC. - 1471-0056 .- 1471-0064. ; 15:1, s. 6-6
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Tidskriftsartikel (övrigt vetenskapligt/konstnärligt)
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| 3. |
- Mattsson, Titti, et al.
(författare)
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Country Reports
- 2020
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Ingår i: Journal of Law, Medicine & Ethics. - : Cambridge University Press (CUP). - 1073-1105 .- 1748-720X. ; 47:4, s. 670-674
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Tidskriftsartikel (övrigt vetenskapligt/konstnärligt)abstract
- The country reports deal with the regulation of international direct-to-participant genomic research.
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| 4. |
- Rynning, Elisabeth, 1955-, et al.
(författare)
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Recent developments in Nordic health law
- 2010
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Ingår i: European Journal of Health Law. - Leiden : Martinus Nijhoff Publishers. - 0929-0273 .- 1571-8093. ; 17:3, s. 279-294
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Tidskriftsartikel (refereegranskat)abstract
- The five Nordic countries — Denmark, Finland, Iceland, Norway and Sweden — share a considerable part of their cultural and historical heritage. They have collaborated closely in their development of legislation during most of the 20th century and are also all traditional welfare states, but nevertheless demonstrate a surprising degree of variety in the area of health law. The Nordic Network for Research in Biomedical Law was founded in 2006, with the aim to promote intra-disciplinary collaboration and stimulate comparative Nordic research in this field of law. Exchange of information on recent legal developments has been a recurrent point on the agenda at the Network meetings.
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