ReviewCurrent genetic medicine reports2019
Consent and Autonomy in the Genomics Era.
Review in Current genetic medicine reports, 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.
- The relationship between uncertainty and trust in genomic medicine and research: A literature review and thematic analysis.European journal of human genetics : EJHG · 2026Review
- Gut microbiota and cancer immunotherapy: from dysbiosis to personalized immune checkpoint blockade optimization.Folia microbiologica · 2026Review
- Non-Directiveness and Authenticity in the Predictive Genetic Clinic.Sociology of health & illness · 2026Article
- Review
- A contextual integrity approach to genomic information: what bioethics can learn from big data ethics.Medicine, health care, and philosophy · 2024Article
- Discussion of off-target and tentative genomic findings may sometimes be necessary to allow evaluation of their clinical significance.Journal of medical ethics · 2024Article
- Ambivalence in genomic healthcare provision, cure or symptom?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
- Dealing with ambivalence in the practice of advanced genetic healthcare: towards an ethical choreography.European journal of human genetics : EJHG · 2023Article
- Human Pangenomics: Promises and Challenges of a Distributed Genomic Reference.Life (Basel, Switzerland) · 2023Review
- Immortal data: a qualitative exploration of patients' understandings of genomic data.European journal of human genetics : EJHG · 2023Article
- Article
- Ethical Considerations in Research with Genomic Data.The New bioethics : a multidisciplinary journal of biotechnology and the body · 2023Article
- Research-Related Stakeholders' Perspectives on Sociocultural Considerations in Biobanking Practice in South Africa.Biopreservation and biobanking · 2023Article
- 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
- The fetus in the age of the genome.Human genetics · 2022Article
- Re-imagining 'the patient': Linked lives and lessons from genomic medicine.Social science & medicine (1982) · 2022Article
- Health care users' acceptance of broad consent for storage of biological materials and associated data for research purposes in Uganda.Wellcome open research · 2022Article
- Uncovering social structures and informational prejudices to reduce inequity in delivery and uptake of new molecular technologies.Journal of medical ethics · 2020Article
- Contributory factors to the evolution of the concept and practice of informed consent in clinical research: A narrative review.Contemporary clinical trials communications · 2020Review
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
2 authors.
Funding
Abstract
purpose of reviewGenomic tests offer increased opportunity for diagnosis, but their outputs are often uncertain and complex; results may need to be revised and/or may not be relevant until some future time. We discuss the challenges that this presents for consent and autonomy. RECENT
findingsPopular discourse around genomic testing tends to be strongly deterministic and optimistic, yet many findings from genomic tests are uncertain or unclear. Clinical conversations need to anticipate and potentially challenge unrealistic expectations of what a genomic test can deliver in order to enhance autonomy and ensure that consent to genomic testing is valid. SUMMARY: We conclude that 'fully informed' consent is often not possible in the context of genomic testing, but that an open-ended approach is appropriate. We consider that such broad consent can only work if located within systems or organisations that are trustworthy and that have measures in place to ensure that such open-ended agreements are not abused. We suggest that a relational concept of autonomy has benefits in encouraging focus on the networks and relationships that allow decision making to flourish.
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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.