ArticleThe Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics2014
A framework for analyzing the ethics of disclosing genetic research findings.
Article in The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics, 2014. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 30 papers, 1 of them a synthesis 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, 1 synthesis or guideline pooled it.
- Guideline for feedback of individual genetic research findings for genomics research in Africa.BMJ global health · 2022Guideline
- Research participants and stakeholders' views on feedback of genetic research findings: a qualitative study of the H3Africa Kidney Disease Research Network in Ghana.BMC nephrology · 2025Article
- Parental perspectives regarding the return of genomic research results in neurodevelopmental disorders in South Africa: anticipated impact and preferences.Journal of community genetics · 2024Article
- Parental Perspectives Regarding the Return of Genomic Research Results in Neurodevelopmental Disorders in South Africa: Anticipated Impact and Preferences.Research square · 2024Article
- Article
- Preferences for return of germline genome sequencing results for cancer patients and their genetic relatives in a research setting.European journal of human genetics : EJHG · 2022Article
- Considerations of Autonomy in Guiding Decisions around the Feedback of Individual Genetic Research Results from Genomics Research: Expectations of and Preferences from Researchers in Botswana.Global health, epidemiology and genomics · 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
- "It's all about delivery": researchers and health professionals' views on the moral challenges of accessing neurobiological information in the context of psychosis.BMC medical ethics · 2021Article
- Do solidarity and reciprocity obligations compel African researchers to feedback individual genetic results in genomics research?BMC medical ethics · 2020Article
- Returning incidental findings in African genomics research.Nature genetics · 2020Article
- Understanding What Information Is Valued By Research Participants, And Why.Health affairs (Project Hope) · 2019Article
- Reconceptualizing harms and benefits in the genomic age.Personalized medicine · 2018Article
- Strategies to Guide the Return of Genomic Research Findings: An Australian Perspective.Journal of bioethical inquiry · 2018Article
- Incidental Findings in Low-Resource Settings.The Hastings Center report · 2018Article
- The Ethics of General Population Preventive Genomic Sequencing: Rights and Social Justice.The Journal of medicine and philosophy · 2018Article
- Ethical considerations in forensic genetics research on tissue samples collected post-mortem in Cape Town, South Africa.BMC medical ethics · 2017Article
- REFUTING THE RIGHT NOT TO KNOW.Journal of health care law & policy · 2017Article
- A Duty To Warn Relatives in Clinical Genetics: Arguably 'Fair just and reasonable' in English Law?Tottel's journal of professional negligence · 2016Article
- Institutional review board perspectives on obligations to disclose genetic incidental findings to research participants.Genetics in medicine : official journal of the American College of Medical Genetics · 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
3 authors.
Funding
Abstract
Whether researchers have an obligation to disclose secondary genetic research findings, and, if so, in what circumstances, remains a matter of heated debate. This paper suggests that much of this confusion is definitional or conceptual in nature. That is, there is significant variability in the way that threshold terms and concepts such as "incidental," "analytic validity," "clinical validity," "clinical relevance," "clinical utility," "clinical significance," and "actionability," are used in the literature, which is impeding efforts to clarify the scope of an obligation to return findings. This paper analyzes the definitional muddle underlying the debate about returning genetic research findings, first, to explain the range of definitions being used in this debate. We go on to propose that, underlying all the seeming confusion and disagreement, three central and widely agreed upon concepts are at work in this debate - validity, value, and volition. Refocusing attention on these core concepts, and their appropriate conceptualizations, can produce a more productive debate regarding the return of genetic research findings.
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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.