ArticleBMC medical ethics2021
Genetic/genomic testing: defining the parameters for ethical, legal and social implications (ELSI).
Article in BMC medical ethics, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 17 papers, 1 of them a synthesis that pooled it.
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Who cites it
17 citing papers in PubMed, 1 synthesis or guideline pooled it, 32 citations in OpenAlex.
- A Systematic Review of Patient-Reported Measures for Individuals Who Underwent Genetic Testing for Heritable Cancer.The patient · 2026Pooled it
- From designer babies to edited food: comparing public attitudes toward CRISPR technology and gene editing in Japan and the United States.BMC medical ethics · 2026Article
- International Survey on Genetic Literacy and Awareness in Patients With Spinal and Bulbar Muscular Atrophy.Neurology. Genetics · 2026Article
- Structured Application of Genetic Testing in a Pediatric Kidney Clinic.Journal of the American Society of Nephrology : JASN · 2026Article
- Medicolegal and ethical concerns in genetic tests communication.Frontiers in sociology · 2026Review
- Value-based health care frameworks for the health technology assessments of "omics" technologies: an international survey.International journal of technology assessment in health care · 2025Article
- Multidisciplinary stakeholder-informed identification of key characteristics for implementation of workplace genetic testing.HGG advances · 2025Article
- Monogenic diabetes: An evidence-based clinical approach.World journal of diabetes · 2025Review
- Implementing Personalized Cancer Medicine: Insights from a Qualitative Interview Study.Journal of personalized medicine · 2025Article
- From one size fits all to a tailored approach: integrating precision medicine into medical education.BMC medical education · 2025Article
- Research participants' perception of ethical issues in stroke genomics and neurobiobanking research in Africa.PloS one · 2025Article
- Mapping the state-of-the-art of the barriers for personalized preventive approaches worldwide: A scoping review of reviews.PloS one · 2025Article
- Barriers and Facilitators to Participation in Clinical Trials Related to Familial Frontotemporal Dementia: A Qualitative Study.Molecular genetics & genomic medicine · 2024Article
- Whole genome sequencing in clinical practice.BMC medical genomics · 2024Review
- Non-Coding RNAs in Rheumatoid Arthritis: Implications for Biomarker Discovery.Non-coding RNA · 2022Article
- A roadmap to increase diversity in genomic studies.Nature medicine · 2022Review
- To use or not to use? an ethical analysis of access to data and samples of a deceased patient for genetic diagnostic and research purposes.Journal of medical ethics and history of medicine · 2022Article
Corrections and comments
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Authors and funding
4 authors at 3 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundGenetic/genomic testing (GGT) are useful tools for improving health and preventing diseases. Still, since GGT deals with sensitive personal information that could significantly impact a patient's life or that of their family, it becomes imperative to consider Ethical, Legal and Social Implications (ELSI). Thus, ELSI studies aim to identify and address concerns raised by genomic research that could affect individuals, their family, and society. However, there are quantitative and qualitative discrepancies in the literature to describe the elements that provide content to the ELSI studies and such problems may result in patient misinformation and harmful choices.
methodsWe analyzed the major international documents published by international organizations to specify the parameters that define ELSI and the recognized criteria for GGT, which may prove useful for researchers, health professionals and policymakers. First, we defined the parameters of the ethical, legal and social fields in GGT to avoid ambiguities when using the acronym ELSI. Then, we selected nine documents from 44 relevant publications by international organizations related to genomic medicine.
resultsWe identified 29 ELSI sub-criteria concerning to GGT, which were organized and grouped within 10 minimum criteria: two from the ethical field, four from the legal field and four from the social field. An additional analysis of the number of appearances of these 29 sub-criteria in the analyzed documents allowed us to order them and to determine 7 priority criteria for starting to evaluate and propose national regulations for GGT.
conclusionsWe propose that the ELSI criteria identified herein could serve as a starting point to formulate national regulation on personalized genomic medicine, ensuring consistency with international bioethical requirements.
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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.