ArticleThe American journal of bioethics : AJOB2019
Genomic Contextualism: Shifting the Rhetoric of Genetic Exceptionalism.
Article in The American journal of bioethics : AJOB, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 39 papers, 3 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
39 citing papers in PubMed, 3 syntheses or guidelines pooled it.
- Polygenic risk scores in the clinic: a systematic review of stakeholders' perspectives, attitudes, and experiences.European journal of human genetics : EJHG · 2025Pooled it
- A systematic literature review of disclosure practices and reported outcomes for medically actionable genomic secondary findings.Genetics in medicine : official journal of the American College of Medical Genetics · 2021Pooled it
- The full spectrum of ethical issues in pediatric genome-wide sequencing: a systematic qualitative review.BMC pediatrics · 2021Pooled it
- Personalized health predictions challenge existing insurance frameworks: Time to revisit life and disability insurance regulation?Journal of genetic counseling · 2026Article
- Virtual deliberation on genetics research: report-out of key themes from Diné (Navajo) research & healthcare professionals.Journal of community genetics · 2026Article
- Review
- Using voice and speech data in healthcare: a scoping review of the ethical, legal and social implications.Frontiers in digital health · 2026Review
- Genetic exceptionalism and genomic contextualism among Asian Americans: a qualitative study.Journal of community genetics · 2025Article
- An end to genetic exceptionalism: reframing the ethics of genomic sequencing for rapid neonatal diagnosis.Seminars in perinatology · 2025Review
- How Neonatologists Use Genetic Information.The Journal of pediatrics · 2025Article
- A decade of research on genetic privacy: the findings of the GetPreCiSe Center at Vanderbilt University.Frontiers in genetics · 2025Review
- Attitudes Towards Non-directiveness Among Medical Geneticists in Germany and Switzerland.Journal of bioethical inquiry · 2024Article
- Community engagement conduct for genetics and genomics research: a qualitative study of the experiences and perspectives of key stakeholders in Uganda.BMC medical ethics · 2024Article
- Beyond Bias: Aggregate Approaches to Conflicts of Interest Research and Policy in Biomedical Research.World medical & health policy · 2024Article
- "Unnatural resources?": parallels and distinctions between the Newfoundland Genome and traditional resource sectors.Journal of community genetics · 2024Article
- Assessment of the current status of real-world pharmacogenomic testing: informed consent, patient education, and related practices.Frontiers in pharmacology · 2024Article
- Immortal data: a qualitative exploration of patients' understandings of genomic data.European journal of human genetics : EJHG · 2023Article
- Perceptions of pharmacogenetic exceptionalism and the implications for clinical management within an electronic health record.Clinical and translational science · 2022Article
- Contextual Exceptionalism After Death: An Information Ethics Approach to Post-Mortem Privacy in Health Data Research.Science and engineering ethics · 2022Article
- Framing utility: Regulatory reform and genetic tests in the USA, 1989-2000.Social science & medicine (1982) · 2022Article
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Authors and funding
4 authors.
Funding
Abstract
As genomic science has evolved, so have policy and practice debates about how to describe and evaluate the ways in which genomic information is treated for individuals, institutions, and society. The term genetic exceptionalism, describing the concept that genetic information is special or unique, and specifically different from other kinds of medical information, has been utilized widely, but often counterproductively in these debates. We offer genomic contextualism as a new term to frame the characteristics of genomic science in the debates. Using stasis theory to draw out the important connection between definitional issues and resulting policies, we argue that the framework of genomic contextualism is better suited to evaluating genomics and its policy-relevant features to arrive at more productive discussion and resolve policy debates.
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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.