ArticleJournal of epidemiology2008
Ethics of future disclosure of individual risk information in a genetic cohort study: a survey of donor preferences.
Article in Journal of epidemiology, 2008. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 14 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.
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Who cites it
14 citing papers in PubMed, 1 synthesis or guideline pooled it, 25 citations in OpenAlex.
- Return of individual research results from genomic research: A systematic review of stakeholder perspectives.PloS one · 2021Pooled it
- The return of individual genomic results to research participants: design and pilot study of Tohoku Medical Megabank Project.Journal of human genetics · 2022Article
- A systematic approach to the disclosure of genomic findings in clinical practice and research: a proposed framework with colored matrix and decision-making pathways.BMC medical ethics · 2021Article
- Views on genomic research result delivery methods and informed consent: a review.Personalized medicine · 2021Review
- Information Topics of Greatest Interest for Return of Genome Sequencing Results among Women Diagnosed with Breast Cancer at a Young Age.Journal of genetic counseling · 2017Article
- Article
- Social and Communicative Functions of Informed Consent Forms in East Asia and Beyond.Frontiers in genetics · 2017Article
- Managing clinically significant findings in research: the UK10K example.European journal of human genetics : EJHG · 2014Article
- Ethical challenges for the design and conduct of mega-biobanking from Great East Japan Earthquake victims.BMC medical ethics · 2014Article
- A framework for analyzing the ethics of disclosing genetic research findings.The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2014Article
- Secondary variants--in defense of a more fitting term in the incidental findings debate.European journal of human genetics : EJHG · 2013Article
- Developing a policy for paediatric biobanks: principles for good practice.European journal of human genetics : EJHG · 2013Article
- Public preferences regarding the return of individual genetic research results: findings from a qualitative focus group study.Genetics in medicine : official journal of the American College of Medical Genetics · 2012Article
- Preferences regarding genetic research results: comparing veterans and nonveterans responses.Public health genomics · 2010Article
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 3 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundAlthough genetic epidemiologic research has added an element of individualization to epidemiologic research, there is neither agreement nor much discussion on whether donors of genetic samples should be offered an opportunity to receive individualized results regarding their genetic susceptibility to disease. Little is known regarding donors' preferences for future disclosure of individual results. The purpose of this study is to investigate the actual preferences of such donors with regard to receiving individual results, to explore the factors related to their decision, and then to discuss ethical issues regarding the disclosure of results.
methodsParticipants (n = 1857) of an ongoing Japanese population-based genetic cohort study in Takashima, Shiga, in 2003, were asked at entry about their preferences with regard being recontacted by researchers in the future and whether they wanted to receive reports on their individual genetic results if genetic problems relevant to their health are discovered for which efficacious interventions might be available.
resultsMost of the donors wished to be recontacted and receive reports, but some did not want any reports. Those who were younger, former/current drinkers, or had at least 1 parent who had had cancer were more likely to want the results, while those who had at least 1 sibling with a medical history of cancer were less likely to want the results.
conclusionWe observed a high level of positive preference for future disclosure of individual genetic results, which is in line with the professional views on the ethics of this issue. A well-considered procedure for ascertaining donors' preferences for receiving the results of the research is required from an ethical perspective.
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