ArticleGenetics in medicine : official journal of the American College of Medical Genetics2020
Psychiatric genomics researchers' perspectives on best practices for returning results to individual participants.
Article in Genetics in medicine : official journal of the American College of Medical Genetics, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 10 papers, 3 of them syntheses that pooled it.
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Who cites it
10 citing papers in PubMed, 3 syntheses or guidelines pooled it, 16 citations in OpenAlex.
- Strategies to facilitate the report-back of research results: a systematic review of methods and evaluations.Environmental health : a global access science source · 2026Pooled it
- Genetic testing in psychiatry, the perceptions of healthcare workers and patients: a mini review.Frontiers in public health · 2024Pooled it
- Return of individual research results from genomic research: A systematic review of stakeholder perspectives.PloS one · 2021Pooled it
- Ethical and social issues in prediction of risk of severe mental illness: a scoping review and thematic analysis.BMC psychiatry · 2025Article
- Communicating the risk of dementia: a scoping review.BMJ neurology open · 2025Article
- A practical checklist for return of results from genomic research in the European context.European journal of human genetics : EJHG · 2023Article
- Views on genomic research result delivery methods and informed consent: a review.Personalized medicine · 2021Review
- Return of results in a global survey of psychiatric genetics researchers: practices, attitudes, and knowledge.Genetics in medicine : official journal of the American College of Medical Genetics · 2021Article
- Perceptions of best practices for return of results in an international survey of psychiatric genetics researchers.European journal of human genetics : EJHG · 2021Article
- Genetic feedback for psychiatric conditions: Where are we now and where are we going.American journal of medical genetics. Part B, Neuropsychiatric genetics : the official publication of the International Society of Psychiatric Genetics · 2020Review
Corrections and comments
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Authors and funding
5 authors at 1 institution in 1 country.
Funding
Abstract
purposeLarge-scale array-based and sequencing studies have advanced our understanding of the genetic architecture of psychiatric disorders, but also increased the potential to generate an exponentially larger amount of clinically relevant findings. As genomic testing becomes more widespread in psychiatry research, urgency grows to establish best practices for offering return of results (RoR) to individuals at risk or diagnosed with a psychiatric disorder.
methodsWe interviewed an international sample (n = 39) of psychiatric genetics researchers to examine conceptualizations of "best practices" for RoR to individual research participants.
resultsWhile the vast majority of researchers do not offer RoR, most believed medically actionable findings (85%) and clinically valid but non-medically actionable findings (54%) should be offered. Researchers identified three main areas for improvement: interfacing with individual participants; interdisciplinary training, guidance, and integration; and quality planning and resource allocation for returning results.
conclusionThere are significant gaps between researchers' visions for "best" versus "actual" RoR practices. While researchers call for participant-centered practices, including consent practices that consider any special needs of participants with psychiatric disorders, return of individually meaningful results, and effective follow-up and provisions for treatment, the current reality is that consent and RoR practices lack standardized and evidence-based norms.
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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.