ArticleGenetics in medicine : official journal of the American College of Medical Genetics2019
Normative and conceptual ELSI research: what it is, and why it's important.
Article in Genetics in medicine : official journal of the American College of Medical Genetics, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 24 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
24 citing papers in PubMed, 40 citations in OpenAlex.
- Toward a framework for measuring the impact of ELSI research.Nature genetics · 2026Article
- HPRC2: A human pangenome reference with near-complete coverage of common genetic variation.bioRxiv : the preprint server for biology · 2026Article
- Mapping social implications of wearables to monitor physical activity in palliative care - a qualitative approach.BMC palliative care · 2026Article
- CARE-HOUSE: developing a framework for conceptualizing social implications of digital health technologies in palliative care.BMC palliative care · 2026Article
- New technology must support, not restrict humaneness: a qualitative interview study on the potential influences of a new digital system on specialist palliative home care.BMC palliative care · 2026Article
- Ethical, legal, and social issues related to ingestible, implantable electronic devices and mRNA delivery devices.Device · 2025Article
- The Australian LINEAGE Study: advancing and implementing international guidance on genomic data within local governance frameworks.NPJ genomic medicine · 2025Article
- Acceptability of risk-based breast cancer screening among professionals and healthcare providers from 6 countries contributing to the MyPeBS study.BMC cancer · 2025Article
- Community-engaged artificial intelligence: an upstream, participatory design, development, testing, validation, use and monitoring framework for artificial intelligence and machine learning models in the Alaska Tribal Health System.Frontiers in artificial intelligence · 2025Article
- Mapping international research output within ethical, legal, and social implications (ELSI) of assisted reproductive technologies.Journal of assisted reproduction and genetics · 2023Review
- Three decades of ethical, legal, and social implications research: Looking back to chart a path forward.Cell genomics · 2022Article
- Article
- Optimizing Ethics Engagement in Research: Learning from the Ethical Complexities of Studying Opioid Use in Pregnancy.The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2022Article
- Assessing Pain Research: A Narrative Review of Emerging Pain Methods, Their Technosocial Implications, and Opportunities for Multidisciplinary Approaches.Frontiers in pain research (Lausanne, Switzerland) · 2022Review
- 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
- Anticipating the ethical, legal, and social implications of human genome research: An ongoing experiment.American journal of medical genetics. Part A · 2021Article
- Family-level impact of genetic testing: integrating health economics and ethical, legal, and social implications.Personalized medicine · 2021Article
- Ethical, legal, and social issues (ELSI) in rare diseases: a landscape analysis from funders.European journal of human genetics : EJHG · 2020Article
- Educational and Ethical Considerations for Genetic Test Implementation Within Health Care Systems.Network and systems medicine · 2020Review
- Power Sharing, Capacity Building, and Evolving Roles in ELSI: The Center for the Ethics of Indigenous Genomic Research.Collaborations (Coral Gables, Fla.) · 2020Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
5 authors at 3 institutions in 3 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
The Ethical, Legal, and Social Implications (ELSI) Research Program of the National Human Genome Research Institute sponsors research examining ethical, legal, and social issues arising in the context of genetics/genomics. The ELSI Program endorses an understanding of research not as the sole province of empirical study, but instead as systematic study or inquiry, of which there are many types and methods. ELSI research employs both empirical and nonempirical methods. Because the latter remain relatively unfamiliar to biomedical and translational scientists, this paper seeks to elucidate the relationship between empirical and nonempirical methods in ELSI research. It pays particular attention to the research questions and methods of normative and conceptual research, which examine questions of value and meaning, respectively. To illustrate the distinct but interrelated roles of empirical and nonempirical methods in ELSI research, including normative and conceptual research, the paper demonstrates how a range of methods may be employed both to examine the evolution of the concept of incidental findings (including the recent step toward terming them 'secondary findings'), and to address the normative question of how genomic researchers and clinicians should manage incidental such findings.
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.