ArticlePloS one2014
Do participants in genome sequencing studies of psychiatric disorders wish to be informed of their results? A survey study.
Article in PloS one, 2014. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 25 papers, 2 of them syntheses 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
25 citing papers in PubMed, 2 syntheses or guidelines pooled it, 34 citations in OpenAlex.
- Return of individual research results from genomic research: A systematic review of stakeholder perspectives.PloS one · 2021Pooled it
- Stakeholder views on secondary findings in whole-genome and whole-exome sequencing: a systematic review of quantitative and qualitative studies.Genetics in medicine : official journal of the American College of Medical Genetics · 2017Pooled it
- No prediction without prevention: A global qualitative study of attitudes toward using a prediction tool for risk of developing depression during adolescence.Global mental health (Cambridge, England) · 2024Article
- Return of Results in Genomic Research Using Large-Scale or Whole Genome Sequencing: Toward a New Normal.Annual review of genomics and human genetics · 2023Review
- Participant views on practical considerations for feedback of individual genetic research results: a case study from Botswana.Global bioethics = Problemi di bioetica · 2023Article
- Views on genomic research result delivery methods and informed consent: a review.Personalized medicine · 2021Review
- Disclosure of clinically actionable genetic variants to thoracic aortic dissection biobank participants.BMC medical genomics · 2021Article
- Perceptions of best practices for return of results in an international survey of psychiatric genetics researchers.European journal of human genetics : EJHG · 2021Article
- 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
- Willingness to participate in genome testing: a survey of public attitudes from Qatar.Journal of human genetics · 2020Article
- Article
- Psychiatric genomics researchers' perspectives on best practices for returning results to individual participants.Genetics in medicine : official journal of the American College of Medical Genetics · 2020Article
- Psychiatric genetics researchers' views on offering return of results to individual participants.American journal of medical genetics. Part B, Neuropsychiatric genetics : the official publication of the International Society of Psychiatric Genetics · 2019Article
- Attitudes toward the right to autonomous decision-making in psychiatric genetic testing: Controversial and context-dependent.American journal of medical genetics. Part B, Neuropsychiatric genetics : the official publication of the International Society of Psychiatric Genetics · 2019Article
- Article
- Receptiveness to participation in genetic research: A pilot study comparing views of people with depression, diabetes, or no illness.Journal of psychiatric research · 2017Article
- Stakeholders in psychiatry and their attitudes toward receiving pertinent and incident findings in genomic research.American journal of medical genetics. Part A · 2017Article
- A qualitative analysis of the attitudes of Irish patients towards participation in genetic-based research.Irish journal of medical science · 2016Article
- How, who, and when: preferences for delivery of genome sequencing results among women diagnosed with breast cancer at a young age.Molecular genetics & genomic medicine · 2016Article
- Preferences for return of incidental findings from genome sequencing among women diagnosed with breast cancer at a young age.Clinical genetics · 2016Article
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 at 2 institutions in 1 country.
Funding
Abstract
objectiveAs large-scale genome sequencing technology advances, concerns surrounding the reporting of individual findings to study volunteers have grown and fueled controversy. This is especially true in mental health research, where the clinical importance of sequencing results is particularly unclear. The ethical, legal, and social issues are being widely debated, but less is known about the attitudes of actual study volunteers toward sequencing studies or what they wish to learn about their DNA sequence and its health implications. This study provides information on psychiatric research volunteers' attitudes, beliefs, and concerns with respect to participation in DNA sequencing studies and reporting of individual results.
methodWe conducted a pilot study using a questionnaire that we developed to assess what information volunteers in an ongoing family study of bipolar disorder would like to receive if they underwent genome sequencing, what they would do with that information, and what concerns they may have.
resultsAlmost all of the respondents were willing to participate in genome sequencing. Most respondents wished to be informed about all their health-related genetic risks, including risks for diseases without known prevention or treatment. However, few respondents felt well informed about the nature of genome sequencing or its implications for their health, insurability, or offspring.
conclusionsDespite generally positive attitudes toward genome sequencing among study volunteers, most are not fully aware of the special issues raised by genome sequencing. The attitudes of study volunteers should be considered in the debate about the reporting of individual findings from genome sequencing.
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What OpenQuestion holds
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.