ArticleBMC medical ethics2017
Healthcare professionals' and patients' perspectives on consent to clinical genetic testing: moving towards a more relational approach.
Article in BMC medical ethics, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 37 papers, 1 of them a synthesis that pooled it.
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Who cites it
37 citing papers in PubMed, 1 synthesis or guideline pooled it.
- A systematic review of consumers' knowledge, attitudes and experiences of primary health professionals' role in genomic medicine.European journal of human genetics : EJHG · 2025Pooled it
- The role of digital tools in the delivery of genomic medicine: enhancing patient-centered care.Genetics in medicine : official journal of the American College of Medical Genetics · 2021Trial
- Exploring experts' views on "Not Parent Expected" discoveries via direct-to-consumer DNA ancestry testing.BMC medical ethics · 2026Article
- Learning about the genetic risk in my family: Preferences of Italian nurses.Journal of community genetics · 2026Article
- "Would you want to know?" Questions of utility and responsibility in Italian laypersons' preferences about genetic risk communication.Journal of community genetics · 2025Article
- Experiences of perinatal genetic screening for people from migrant and refugee backgrounds: a scoping review.European journal of human genetics : EJHG · 2025Article
- Ethical preparedness and developments in genomic healthcare.Journal of medical ethics · 2025Article
- Analysis of informed consent forms of patients undergoing cancer genetic testing in the era of next-generation sequencing.Hereditary cancer in clinical practice · 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
- Development and Assessment of a Point-of-Care Application (Genomic Medicine Guidance) for Heritable Thoracic Aortic Disease.JMIRx med · 2024Article
- Underpinnings of the Halachic Approach to BRCA Screening and Intervention: Facilitating Provider Counseling for Observant Jewish Populations.Rambam Maimonides medical journal · 2024Review
- Frequency and reasons that parents decline genetic testing for critically ill neonates.Genetics in medicine open · 2024Article
- Genomic Medicine Guidance: A Point-of-Care App for Heritable Thoracic Aortic Diseases.medRxiv : the preprint server for health sciences · 2023Article
- Piloting a Spanish-Language Web-Based Tool for Hereditary Cancer Genetic Testing.Current oncology (Toronto, Ont.) · 2023Article
- Immortal data: a qualitative exploration of patients' understandings of genomic data.European journal of human genetics : EJHG · 2023Article
- Article
- Knowledge, awareness, and perception on genetic testing for primary immunodeficiency disease among parents in Malaysia: a qualitative study.Frontiers in immunology · 2023Article
- Germline BRCA testing in pancreatic cancer: improving awareness, timing, turnaround, and uptake.Therapeutic advances in medical oncology · 2023Review
- 'I Don't Like Uncertainty, I Like to Know': How and why uveal melanoma patients consent to life expectancy prognostication.Health expectations : an international journal of public participation in health care and health policy · 2022Article
- Co-designing models for the communication of genomic results for rare diseases: a comparative study in the Czech Republic and the United Kingdom.Journal of community genetics · 2022Article
Corrections and comments
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Authors and funding
5 authors.
Funding
Abstract
backgroundThis paper proposes a refocusing of consent for clinical genetic testing, moving away from an emphasis on autonomy and information provision, towards an emphasis on the virtues of healthcare professionals seeking consent, and the relationships they construct with their patients.
methodsWe draw on focus groups with UK healthcare professionals working in the field of clinical genetics, as well as in-depth interviews with patients who have sought genetic testing in the UK's National Health Service (data collected 2013-2015). We explore two aspects of consent: first, how healthcare professionals consider the act of 'consenting' patients; and second how these professional accounts, along with the accounts of patients, deepen our understanding of the consent process.
resultsOur findings suggest that while healthcare professionals working in genetic medicine put much effort into ensuring patients' understanding about their impending genetic test, they acknowledge, and we show, that patients can still leave genetic consultations relatively uninformed. Moreover, we show how placing emphasis on the informational aspect of genetic testing is not always reflective of, or valuable to, patients' decision-making. Rather, decision-making is socially contextualised - also based on factors outside of information provision.
conclusionsA more collaborative on-going consent process, grounded in virtue ethics and values of honesty, openness and trustworthiness, is proposed.
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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.