ArticleJournal of empirical research on human research ethics : JERHRE2009
Prospective biorepository participants' perspectives on access to research results.
Article in Journal of empirical research on human research ethics : JERHRE, 2009. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 30 papers, 2 of them syntheses that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
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
30 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Return of individual research results from genomic research: A systematic review of stakeholder perspectives.PloS one · 2021Pooled it
- Strategies to work with HLA data in human populations for histocompatibility, clinical transplantation, epidemiology and population genetics: HLA-NET methodological recommendations.International journal of immunogenetics · 2012Guideline
- A randomized study of digital versus genetic counselor return of actionable genetic research results to biobank participants (RESPECT3 study).BMC medical ethics · 2026Article
- 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
- Taking it to the bank: the ethical management of individual findings arising in secondary research.Journal of medical ethics · 2021Article
- Key Expert Stakeholder Perceptions of the Law of Genomics: Identified Problems and Potential Solutions.The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2020Article
- Improving Translation and Cultural Appropriateness of Spanish-Language Consent Materials for Biobanks.Ethics & human research · 2019Article
- 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
- Population-based biobank participants' preferences for receiving genetic test results.Journal of human genetics · 2017Article
- Lessons from HeLa Cells: The Ethics and Policy of Biospecimens.Annual review of genomics and human genetics · 2016Review
- Health professionals' opinions on supporting a cancer biobank: identification of barriers to combat biobanking pitfalls.European journal of human genetics : EJHG · 2016Review
- Views of Cohort Study Participants about Returning Research Results in the Context of Precision Medicine.Public health genomics · 2016Article
- Sharing the Knowledge: Sharing Aggregate Genomic Findings with Research Participants in Developing Countries.Developing world bioethics · 2015Review
- Canadian Research Ethics Board Leadership Attitudes to the Return of Genetic Research Results to Individuals and Their Families.The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2015Article
- Public preferences for the return of research results in genetic research: a conjoint analysis.Genetics in medicine : official journal of the American College of Medical Genetics · 2014Article
- Biobank participants' preferences for disclosure of genetic research results: perspectives from the OurGenes, OurHealth, OurCommunity project.Mayo Clinic proceedings · 2014Article
- Perspectives of clinical genetics professionals toward genome sequencing and incidental findings: a survey study.Clinical genetics · 2013Article
- A closer look at the recommended criteria for disclosing genetic results: perspectives of medical genetic specialists, genomic researchers, and institutional review board chairs.Journal of genetic counseling · 2013Article
- The attitudes of people with sarcoma and their family towards genomics and incidental information arising from genetic research.Clinical sarcoma research · 2013Article
- Return of individual research results and incidental findings: facing the challenges of translational science.Annual review of genomics and human genetics · 2013Review
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
2 authors.
Funding
Abstract
DISCLOSURE OF INDIVIDUAL RESEARCH results to research participants has been the subject of professional guidelines as well as scholarly commentary, yet controversy remains. To gather data on participant perspectives, we interviewed 40 individuals from the Durham, North Carolina area about a biorepository consent form and conducted an in-depth analysis of responses to a series of questions concerning access to research results. Cross-cutting themes emerged about (1) the nature of research; (2) the nature of research results; (3) expectations concerning access to research results; and (4) practical issues in providing access to research results. Our findings highlight the importance for sound policy development of soliciting stakeholder input, and exploring the complexities behind their evaluations.
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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.