ArticleGenetic testing and molecular biomarkers2010
Researcher practices on returning genetic research results.
Article in Genetic testing and molecular biomarkers, 2010. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 21 papers, 1 of them a synthesis that pooled it.
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
21 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Return of individual research results from genomic research: A systematic review of stakeholder perspectives.PloS one · 2021Pooled it
- 'Research ethics · 2024Article
- Article
- Returning personal genetic information on susceptibility to arsenic toxicity to research participants in Bangladesh.Environmental research · 2024Article
- Return of aggregate results to study participants: Facilitators, barriers, and recommendations.Contemporary clinical trials communications · 2023Article
- Perspectives on returning individual and aggregate genomic research results to study participants and communities in Kenya: a qualitative study.BMC medical ethics · 2022Article
- Return of research results (RoRR) to the healthy CHRIS cohort: designing a policy with the participants.Journal of community genetics · 2021Article
- Views on genomic research result delivery methods and informed consent: a review.Personalized medicine · 2021Review
- Research Participants' Attitudes towards Receiving Information on Genetic Susceptibility to Arsenic Toxicity in Rural Bangladesh.Public health genomics · 2020Article
- From information to follow-up: Ethical recommendations to facilitate the disclosure of amyloid PET scan results in a research setting.Alzheimer's & dementia (New York, N. Y.) · 2018Review
- Amnestic MCI patients' experiences after disclosure of their amyloid PET result in a research context.Alzheimer's research & therapy · 2017Article
- Article
- Scientists' perspectives on consent in the context of biobanking research.European journal of human genetics : EJHG · 2015Article
- Biobank participants' preferences for disclosure of genetic research results: perspectives from the OurGenes, OurHealth, OurCommunity project.Mayo Clinic proceedings · 2014Article
- Can I be sued for that? Liability risk and the disclosure of clinically significant genetic research findings.Genome research · 2014Article
- Communication of genetic test results to family and health-care providers following disclosure of research results.Genetics in medicine : official journal of the American College of Medical Genetics · 2014Article
- Maternal perspectives on the return of genetic results: context matters.American journal of medical genetics. Part A · 2013Article
- The legal risks of returning results of genomics research.Genetics in medicine : official journal of the American College of Medical Genetics · 2012Article
- Researchers' opinions towards the communication of results of biobank research: a survey study.European journal of human genetics : EJHG · 2012Article
- IRB perspectives on the return of individual results from genomic research.Genetics in medicine : official journal of the American College of Medical Genetics · 2012Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
4 authors.
Funding
Abstract
BACKGROUND/
aimsas genetic and genomic research proliferates, debate has ensued about returning results to participants. In addition to consideration of the benefits and harms to participants, researchers must also consider the logistical and financial feasibility of returning research results. However, little data exist of actual researcher practices.
methodswe conducted an online survey of 446 corresponding authors of genetic/genomic studies conducted in the United States and published in 2006-2007 to assess the frequency with which they considered, offered to, or actually returned research results, what factors influenced these decisions, and the method of communicating results.
resultsthe response rate was 24% (105/446). Fifty-four percent of respondents considered the issue of returning research results to participants, 28% offered to return individual research results, and 24% actually returned individual research results. Of those who considered the issue of returning research results during the study planning phase, the most common factors considered were whether research results were deemed clinically useful (18%) and respect for participants (13%). Researchers who had a medical degree and conducted studies on children were significantly more likely to offer to return or actually return individual results compared to those with a Ph.D. only.
conclusionswe speculate that issues associated with clinical validity and respect for participants dominated concerns of time and expense given the prominent and continuing ethical debates surrounding genetics and genomics research. The substantial number of researchers who did not consider returning research results suggests that researchers and institutional review boards need to devote more attention to a topic about which research participants are interested.
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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.