ArticleThe American journal of bioethics : AJOB2008
Public expectations for return of results from large-cohort genetic research.
Article in The American journal of bioethics : AJOB, 2008. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 163 papers, 6 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
163 citing papers in PubMed, 6 syntheses or guidelines pooled it.
- Attitudes and beliefs regarding race-targeted genetic testing of Black people: A systematic review.Journal of genetic counseling · 2023Pooled it
- Return of individual research results from genomic research: A systematic review of stakeholder perspectives.PloS one · 2021Pooled it
- Stakeholders' perspectives on biobank-based genomic research: systematic review of the literature.European journal of human genetics : EJHG · 2015Pooled it
- Current practice of public involvement activities in biomedical research and innovation: a systematic qualitative review.PloS one · 2014Pooled it
- Ethical aspects of human biobanks: a systematic review.Croatian medical journal · 2011Pooled it
- Ethical and practical guidelines for reporting genetic research results to study participants: updated guidelines from a National Heart, Lung, and Blood Institute working group.Circulation. Cardiovascular genetics · 2010Guideline
- Enhancing Autonomy in Biobank Decisions: Too Much of a Good Thing?Journal of empirical research on human research ethics : JERHRE · 2018Trial
- Willingness to donate biosamples to a national biobank in Israel: a population-based cross-sectional survey.Israel journal of health policy research · 2026Article
- Adolescent and Young Adult Perspectives on Receiving Pathogenic or Likely Pathogenic Results in a Prospective Genomic Screening Clinical Trial.Public health genomics · 2026Article
- Research participants' perspectives regarding the feedback of secondary findings-A cohort from the DDD-Africa study, South Africa.Journal of genetic counseling · 2024Article
- Returning personal genetic information on susceptibility to arsenic toxicity to research participants in Bangladesh.Environmental research · 2024Article
- Studying the impact of translational genomic research: Lessons from eMERGE.American journal of human genetics · 2023Review
- Return of Individual Research Results: Participant Perspectives in a Longitudinal Community-Based Sample.Journal of empirical research on human research ethics : JERHRE · 2023Article
- Personal Health Record for Personalizing Research and Care Trajectories: A Proof of Concept Pilot with Diet in Inflammatory Bowel Diseases.Journal of personalized medicine · 2023Article
- Return of individual genomic research results within the PRAEGNANT multicenter registry study.Breast cancer research and treatment · 2023Article
- Perspectives of peripartum people on opportunities for personal and collective action to reduce exposure to everyday chemicals: Focus groups to inform exposure report-back.Environmental research · 2022Article
- Perspectives on returning individual and aggregate genomic research results to study participants and communities in Kenya: a qualitative study.BMC medical ethics · 2022Article
- Participants' Preferences and Reasons for Wanting Feedback of Individual Genetic Research Results From an HIV-TB Genomic Study: A Case Study From Botswana.Journal of empirical research on human research ethics : JERHRE · 2021Article
- A survey of aortic disease biorepository participants' preferences for return of research genetic results.Journal of genetic counseling · 2021Article
- Views on genomic research result delivery methods and informed consent: a review.Personalized medicine · 2021Review
103 more citing papers are in PubMed but not listed here.
Corrections and comments
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Authors and funding
6 authors.
Funding
Abstract
The National Institutes of Health and other federal health agencies are considering establishing a national biobank to study the roles of genes and environment in human health. A preliminary public engagement study was conducted to assess public attitudes and concerns about the proposed biobank, including the expectations for return of individual research results. A total of 141 adults of different ages, incomes, genders, ethnicities, and races participated in 16 focus groups in six locations across the country. Focus group participants voiced a strong desire to be able to access individual research results. Recognizing the wide range of possible research results from a large cohort study, they repeatedly and spontaneously suggested that cohort study participants be given ongoing choices as to which results they received.
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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.