ArticleJournal of medical ethics2018
Towards a national genomics medicine service: the challenges facing clinical-research hybrid practices and the case of the 100 000 genomes project.
Article in Journal of medical ethics, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 26 papers, 2 of them syntheses that pooled it.
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
26 citing papers in PubMed, 2 syntheses or guidelines pooled it, 46 citations in OpenAlex.
- Opportunities for a national genomic data governance framework in Australia: a systematic review.BMC medical ethics · 2025Pooled it
- Return of individual research results from genomic research: A systematic review of stakeholder perspectives.PloS one · 2021Pooled it
- Diagnostic discovery of structural variants causing foveal hypoplasia using SVRare and long-read nanopore sequencing.European journal of human genetics : EJHG · 2026Article
- Caring for Rare Genetic Disease: A Vision for the Future.Journal of genetic counseling · 2026Article
- The critical need to implement pharmacogenomics in public health services: Mexico in the global picture.Frontiers in public health · 2026Article
- The Fortunes of Genomic Medicine: A Quarter Century of Promise.Annals of human genetics · 2025Article
- "I'm quite proud of how we've handled it": health professionals' experiences of returning additional findings from the 100,000 genomes project.European journal of human genetics : EJHG · 2025Article
- The value of large-scale programmes in human genomics.European journal of human genetics : EJHG · 2025Article
- Ethical preparedness and developments in genomic healthcare.Journal of medical ethics · 2025Article
- Attitude towards consent-free research use of personal medical data in the general German population.Heliyon · 2024Article
- Informed consent for whole genome sequencing in mainstream clinics: logistical constraints and possible solutions.European journal of human genetics : EJHG · 2024Article
- A practical checklist for return of results from genomic research in the European context.European journal of human genetics : EJHG · 2023Article
- Beyond regulatory approaches to ethics: making space for ethical preparedness in healthcare research.Journal of medical ethics · 2023Article
- Managing expectations, rights, and duties in large-scale genomics initiatives: a European comparison.European journal of human genetics : EJHG · 2023Article
- Community Engagement in Precision Medicine Research: Organizational Practices and Their Impacts for Equity.AJOB empirical bioethics · 2023Article
- Queensland Genomics: an adaptive approach for integrating genomics into a public healthcare system.NPJ genomic medicine · 2021Review
- Towards a Responsible Transition to Learning Healthcare Systems in Precision Medicine: Ethical Points to Consider.Journal of personalized medicine · 2021Review
- Demonstrating trustworthiness when collecting and sharing genomic data: public views across 22 countries.Genome medicine · 2021Article
- Views on genomic research result delivery methods and informed consent: a review.Personalized medicine · 2021Review
- The ethics of genomic medicine: redefining values and norms in the UK and France.European journal of human genetics : EJHG · 2021Article
Corrections and comments
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Authors and funding
4 authors at 2 institutions in 1 country.
Funding
Abstract
Clinical practice and research are governed by distinct rules and regulations and have different approaches to, for example, consent and providing results. However, genomics is an example of where research and clinical practice have become codependent. The 100 000 genomes project (100kGP) is a hybrid venture where a person can obtain a clinical investigation only if he or she agrees to also participate in ongoing research-including research by industry and commercial companies. In this paper, which draws on 20 interviews with professional stakeholders involved in 100kGP, we investigate the ethical issues raised by this project's hybrid nature. While some interviewees thought the hybrid nature of 100kGP was its vanguard, interviewees identified several tensions around hybrid practice: how to decide who should be able to participate; how to determine whether offering results might unduly influence participation into wide-ranging but often as yet unknown research and how to ensure that patients/families do not develop false expectations about receiving results. These areas require further debate as 100kGP moves into routine healthcare in the form of the national genomic medicine service. To address the tensions identified, we explore the appropriateness of Faden et al.'s framework of ethical obligations for when research and clinical care are completely integrated. We also argue that enabling ongoing transparent and trustworthy communication between patients/families and professionals around the kinds of research that should be permitted in 100kGP will help to understand and ensure that expectations remain realistic. Our paper aims to encourage a focused discussion about these issues and to inform a new 'social contract' for research and clinical care in the health service.
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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.