ArticleJournal of empirical research on human research ethics : JERHRE2011
Research participants' perspectives on genotype-driven research recruitment.
Article in Journal of empirical research on human research ethics : JERHRE, 2011. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 18 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.
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Who cites it
18 citing papers in PubMed, 39 citations in OpenAlex.
- Online Survey Retention and Re-engagement: Learning from the COVID-19 Social Study.Field methods · 2025Article
- Experiences of participants with undiagnosed diseases and hereditary cancers during the initial phase of the Hong Kong genome project: a mixed-methods study.Human genomics · 2025Article
- How to communicate and what to disclose to participants in a recall-by-genotype research approach: a multistep empirical study.Journal of community genetics · 2024Article
- Participant perspective on the recall-by-genotype research approach: a mixed-method embedded study with participants of the CHRIS study.European journal of human genetics : EJHG · 2023Article
- Genotype first: Clinical genomics research through a reverse phenotyping approach.American journal of human genetics · 2023Review
- Ethical, legal and social/societal implications (ELSI) of recall-by-genotype (RbG) and genotype-driven-research (GDR) approaches: a scoping review.European journal of human genetics : EJHG · 2022Article
- Balancing scientific interests and the rights of participants in designing a recall by genotype study.European journal of human genetics : EJHG · 2021Article
- Informed Consent in Translational Genomics: Insufficient Without Trustworthy Governance.The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2018Article
- Formalising recall by genotype as an efficient approach to detailed phenotyping and causal inference.Nature communications · 2018Review
- Authorization of tissues from deceased patients for genetic research.Human genetics · 2018Article
- Research altruism as motivation for participation in community-centered environmental health research.Social science & medicine (1982) · 2018Article
- Genotype-driven recruitment: a strategy whose time has come?BMC medical genomics · 2013Article
- Am I a control?: Genotype-driven research recruitment and self-understandings of study participants.Genetics in medicine : official journal of the American College of Medical Genetics · 2012Article
- Recommendations for ethical approaches to genotype-driven research recruitment.Human genetics · 2012Article
- Epilepsy patient-participants and genetic research results as "answers".Journal of empirical research on human research ethics : JERHRE · 2011Article
- Parent perspectives on pediatric genetic research and implications for genotype-driven research recruitment.Journal of empirical research on human research ethics : JERHRE · 2011Article
- The meaning of genetic research results: reflections from individuals with and without a known genetic disorder.Journal of empirical research on human research ethics : JERHRE · 2011Article
- Should Researchers Offer Results to Family Members of Cancer Biobank Participants? A Mixed-Methods Study of Proband and Family Preferences.AJOB empirical bioethicsArticle
Corrections and comments
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Authors and funding
10 authors at 3 institutions in 1 country.
Funding
Abstract
Genotype-driven recruitment is a potentially powerful approach for studying human genetic variation but presents ethical challenges. We conducted in-depth interviews with research participants in six studies where such recruitment occurred. Nearly all responded favorably to the acceptability of recontact for research recruitment, and genotype-driven recruitment was viewed as a positive sign of scientific advancement. Reactions to questions about the disclosure of individual genetic research results varied. Common themes included explaining the purpose of recontact, informing decisions about further participation, reciprocity, "information is valuable," and the possibility of benefit, as well as concerns about undue distress and misunderstanding. Our findings suggest contact about additional research may be least concerning if it involves a known element (e.g., trusted researchers). Also, for genotype-driven recruitment, it may be appropriate to set a lower bar for disclosure of individual results than the clinical utility threshold recommended more generally.
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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.