ArticleGenetics in medicine : official journal of the American College of Medical Genetics2012
Offering aggregate results to participants in genomic research: opportunities and challenges.
Article in Genetics in medicine : official journal of the American College of Medical Genetics, 2012. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 38 papers.
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
38 citing papers in PubMed, 60 citations in OpenAlex.
- Trial
- Communicating BRCA research results to patients enrolled in international clinical trials: lessons learnt from the AGO-OVAR 16 study.BMC medical ethics · 2016Trial
- Disclosure of research results: a randomized study on GENEPSO-PS cohort participants.Health expectations : an international journal of public participation in health care and health policy · 2016Trial
- Ethical considerations for sharing aggregate results from pragmatic clinical trials.Clinical trials (London, England) · 2025Article
- Using visual storytelling to share aggregate findings with families participating in clinical genomics research.Genetics in medicine open · 2024Article
- Health Research with Data in a Time of Privacy: Which Information do Patients Want?Journal of empirical research on human research ethics : JERHRE · 2023Article
- "Choice of law" in precision medicine research.American journal of human genetics · 2022Review
- Developing lay summaries and thank you notes in paediatric pragmatic clinical trials.Health expectations : an international journal of public participation in health care and health policy · 2022Review
- An Examination of the Ethical and Legal Limits in Implementing "Traceback Testing" for Deceased Patients.The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2022Article
- Taking it to the bank: the ethical management of individual findings arising in secondary research.Journal of medical ethics · 2021Article
- Preferences for Updates on General Research Results: A Survey of Participants in Genomic Research from Two Institutions.Journal of personalized medicine · 2021Article
- Symbolic Legislation and the Regulation of Stroke Biobanking and Genomics Research in Sub-Saharan Africa.The theory and practice of legislation · 2021Article
- Ethics in genetic counselling.Journal of community genetics · 2019Review
- Paying Tribute to Henrietta Lacks at Tuskegee University and at The Virginia Henrietta Lacks Commission, Richmond, Virginia.Journal of health care for the poor and underserved · 2019Article
- How Returning Aggregate Research Results Impacts Interest in Research Engagement and Planned Actions Relevant to Health Care Decision Making: Cohort Study.Journal of medical Internet research · 2018Article
- Article
- Willingness to Participate in a National Precision Medicine Cohort: Attitudes of Chronic Kidney Disease Patients at a Cleveland Public Hospital.Journal of personalized medicine · 2018Article
- Translating Biobank Science into Patient-Centered Language.Biopreservation and biobanking · 2018Article
- Returning Results: Let's Be Honest!Genetic testing and molecular biomarkers · 2017Article
- Allocation of Resources to Communication of Research Result Summaries.Journal of empirical research on human research ethics : JERHRE · 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 3 institutions in 1 country.
Funding
Abstract
Although issues involved in offering individual results to participants in genomic research have received considerable attention, communication of aggregate results has been the subject of relatively little ethical analysis. Offering participants aggregate results is typically assumed to be a good thing, and studies have found that a significant majority of biobank research participants, when asked about their interest in aggregate results, say that access to such information would be important. Even so, return of aggregate results remains a relatively uncommon practice. In this article, we explore the opportunities involved in communicating aggregate results to participants in genomic research, including affirming the value of research participation, informing participants about research being conducted based on broad consent for future unspecified research, educating participants and the public about the research process, and building trust in the research enterprise. We also explore some of the challenges, including the complex intersection between individual and aggregate results, as well as practical hurdles. We conclude by offering our preliminary recommendations concerning the provision of aggregate results and an agenda for much-needed future research.
Indexed as
Identifiers
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.