ArticleThe American journal of bioethics : AJOB2013
Do researchers have an obligation to actively look for genetic incidental findings?
Article in The American journal of bioethics : AJOB, 2013. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 47 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
47 citing papers in PubMed.
- Recommendations for return of secondary genomic findings in observational cohort studies.Nature genetics · 2026Review
- Data-driven sudden cardiac arrest research in Europe: Experts' perspectives on ethical challenges and governance strategies.Resuscitation plus · 2023Review
- A survey of aortic disease biorepository participants' preferences for return of research genetic results.Journal of genetic counseling · 2021Article
- Psychiatric genomics researchers' perspectives on best practices for returning results to individual participants.Genetics in medicine : official journal of the American College of Medical Genetics · 2020Article
- Why genomics researchers are sometimes morally required to hunt for secondary findings.BMC medical ethics · 2020Article
- Responsibility, identity, and genomic sequencing: A comparison of published recommendations and patient perspectives on accepting or declining incidental findings.Molecular genetics & genomic medicine · 2018Article
- Meeting Patients' Right to the Correct Diagnosis: Ongoing International Initiatives on Undiagnosed Rare Diseases and Ethical and Social Issues.International journal of environmental research and public health · 2018Review
- What People Want to Know About Their Genes: A Critical Review of the Literature on Large-Scale Genome Sequencing Studies.Healthcare (Basel, Switzerland) · 2018Review
- Paediatric genomics: diagnosing rare disease in children.Nature reviews. Genetics · 2018Review
- "Not pathogenic until proven otherwise": perspectives of UK clinical genomics professionals toward secondary findings in context of a Genomic Medicine Multidisciplinary Team and the 100,000 Genomes Project.Genetics in medicine : official journal of the American College of Medical Genetics · 2018Article
- The Right to Know: A Revised Standard for Reporting Incidental Findings.The Hastings Center report · 2018Article
- Needles, Haystacks and Next-Generation Genetic Sequencing.Health matrix (Cleveland, Ohio : 1991) · 2018Article
- Stakeholders in psychiatry and their attitudes toward receiving pertinent and incident findings in genomic research.American journal of medical genetics. Part A · 2017Article
- Harms of Deception in FMR1 Premutation Genotype-Driven Recruitment.The American journal of bioethics : AJOB · 2017Article
- From Sequence Data to Returnable Results: Ethical Issues in Variant Calling and Interpretation.Genetic testing and molecular biomarkers · 2017Article
- Returning genome sequences to research participants: Policy and practice.Wellcome open research · 2017Article
- REFUTING THE RIGHT NOT TO KNOW.Journal of health care law & policy · 2017Article
- Becoming partners, retaining autonomy: ethical considerations on the development of precision medicine.BMC medical ethics · 2016Article
- Incidental findings of uncertain significance: To know or not to know--that is not the question.BMC medical ethics · 2016Article
- Ethical Considerations for the Return of Incidental Findings in Ophthalmic Genomic Research.Translational vision science & technology · 2016Article
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Authors and funding
2 authors.
Funding
Abstract
The rapid growth of next-generation genetic sequencing has prompted debate about the responsibilities of researchers toward genetic incidental findings. Assuming there is a duty to disclose significant incidental findings, might there be an obligation for researchers to actively look for these findings? We present an ethical framework for analyzing whether there is a positive duty to look for genetic incidental findings. Using the ancillary care framework as a guide, we identify three main criteria that must be present to give rise to an obligation to look: high benefit to participants, lack of alternative access for participants, and reasonable burden on researchers. Our analysis indicates that there is no obligation to look for incidental findings today, but during the ongoing translation of genomic analysis from research to clinical care, this obligation may arise.
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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.