ArticleBiopreservation and biobanking2016
Feedback of Individual Genetic Results to Research Participants: Is It Feasible in Europe?
Article in Biopreservation and biobanking, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 17 papers.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
17 citing papers in PubMed.
- Research participants and stakeholders' views on feedback of genetic research findings: a qualitative study of the H3Africa Kidney Disease Research Network in Ghana.BMC nephrology · 2025Article
- Lessons learned during the process of reporting individual genomic results to participants of a population-based biobank.European journal of human genetics : EJHG · 2023Article
- A practical checklist for return of results from genomic research in the European context.European journal of human genetics : EJHG · 2023Article
- Determinants of participation in glaucoma genomic research in South East Nigeria: A cross-sectional analytical study.PloS one · 2023Article
- Returning raw genomic data: rights of research participants and obligations of health care professionals.The Medical journal of Australia · 2022Article
- The return of individual genomic results to research participants: design and pilot study of Tohoku Medical Megabank Project.Journal of human genetics · 2022Article
- Return of research results (RoRR) to the healthy CHRIS cohort: designing a policy with the participants.Journal of community genetics · 2021Article
- Genotype-first approach to the detection of hereditary breast and ovarian cancer risk, and effects of risk disclosure to biobank participants.European journal of human genetics : EJHG · 2021Article
- Ethical and Policy Considerations for Genomic Testing in Pediatric Research: The Path Toward Disclosing Individual Research Results.American journal of kidney diseases : the official journal of the National Kidney Foundation · 2019Article
- Return of individual genomic research results: are laws and policies keeping step?European journal of human genetics : EJHG · 2019Article
- Data in question: A survey of European biobank professionals on ethical, legal and societal challenges of biobank research.PloS one · 2019Article
- Managing "incidental findings" in biobank research: Recommendations of the Taiwan biobank.Computational and structural biotechnology journal · 2019Review
- The challenges of the expanded availability of genomic information: an agenda-setting paper.Journal of community genetics · 2018Article
- Perceptions of legislation relating to the sharing of genomic biobank results with donors-a survey of BBMRI-ERIC biobanks.European journal of human genetics : EJHG · 2018Article
- Article
- Improved ethical guidance for the return of results from psychiatric genomics research.Molecular psychiatry · 2018Article
- If you build it, they will come: unintended future uses of organised health data collections.BMC medical ethics · 2016Review
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
13 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundThere 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
methodsA 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.
resultsLegal 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.
conclusionsCoordinated 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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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.