ArticleBioethics2022
Moving from 'fully' to 'appropriately' informed consent in genomics: The PROMICE framework.
Article in Bioethics, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 23 papers.
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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.
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Who cites it
23 citing papers in PubMed, 36 citations in OpenAlex.
- Perceived Sensitivity of Sensor-Based Digital Health Data: Qualitative Interview Study.JMIR mHealth and uHealth · 2026Article
- Beyond the 'Pregnancy Black Box': a global roadmap for artificial intelligence-driven pharmacogenomics in maternal-neonatal health.The pharmacogenomics journal · 2026Review
- Clinician perspectives on patient consent for metagenomic next-generation sequencing of blood samples for the diagnosis of infection in clinical practice.Journal of medical microbiology · 2026Article
- Navigating uncertainty during non-invasive prenatal testing: Genetic counselors' experiences of supporting autonomous reproductive decision-making.Journal of genetic counseling · 2026Article
- Fair Consent Transactions and Ethical Pluralism.The Journal of medicine and philosophy · 2026Article
- Experiencing acute genomic care: perspectives from parents in the neonatal and paediatric intensive care units towards rapid genomic sequencing.European journal of human genetics : EJHG · 2026Article
- Public attitudes towards consent for the donation of surplus frozen eggs to research.Human reproduction (Oxford, England) · 2026Article
- Research Ethics Challenges, Controversies and Difficulties in Intensive Care Units-A Systematic Review of Theoretical Concepts.Nursing reports (Pavia, Italy) · 2025Review
- From concept to approval: human genomic data integration with population observational data - insights from a Belgian pilot study.Archives of public health = Archives belges de sante publique · 2025Article
- What does a consent conversation for whole genome sequencing look like in the NHS Genomic Medicine Service? An observational study.European journal of human genetics : EJHG · 2025Observational
- Consent for genomic sequencing: a conversation, not just a form.European journal of human genetics : EJHG · 2025Article
- Parental knowledge, attitudes, satisfaction and decisional conflict regarding whole genome sequencing in the Genomic Medicine Service: a multisite survey study in England.Journal of medical genetics · 2025Article
- Should the scope of NIPT be limited by a 'threshold of seriousness'?European journal of human genetics : EJHG · 2025Article
- Genomic sequencing in newborn screening: balancing consent with the right of the asymptomatic at-risk child to be found.European journal of human genetics : EJHG · 2025Article
- Genetic counselors' and community clinicians' implementation and perceived barriers to informed consent during pre-test counseling for hereditary cancer risk.Journal of genetic counseling · 2025Article
- Attitudes Towards Non-directiveness Among Medical Geneticists in Germany and Switzerland.Journal of bioethical inquiry · 2024Article
- Australian public perspectives on genomic newborn screening: which conditions should be included?Human genomics · 2024Article
- Future-proofing genomic data and consent management: a comprehensive review of technology innovations.GigaScience · 2024Review
- Knowledge, attitudes and decision regret: a longitudinal survey study of participants offered genome sequencing in the 100,000 Genomes Project.European journal of human genetics : EJHG · 2023Article
- 'It's a nightmare': informed consent in paediatric genome-wide sequencing. A qualitative expert interview study from Germany and Switzerland.European journal of human genetics : EJHG · 2023Article
Corrections and comments
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Authors and funding
4 authors at 1 institution in 2 countries.
Funding
Abstract
Genomic sequencing technologies (GS) pose novel challenges not seen in older genetic technologies, making traditional standards for fully informed consent difficult or impossible to meet. This is due to factors including the complexity of the test and the broad range of results it may identify. Meaningful informed consent is even more challenging to secure in contexts involving significant time constraints and emotional distress, such as when rapid genomic testing (RGS) is performed in neonatal intensive care units. In this article, we propose that informed consent matters not for its own sake, but because obtaining it furthers a range of morally important goals, such as promoting autonomy, well-being, and trust in medicine. These goals form the basis of a new framework [PROmoting Morally Important Consent Ends (PROMICE)] for assessing the ethical appropriateness of various informed consent models. We illustrate this framework with two examples: (a) a tiered and layered consent model for obtaining consent for GS, and (b) consent for RGS in critically ill newborns. We conclude that appropriately-rather than fully-informed consent provides the correct standard for genomic medicine and research.
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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.