ArticleJournal of community genetics2016
Was it worth it? Patients' perspectives on the perceived value of genomic-based individualized medicine.
Article in Journal of community genetics, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 33 papers, 1 of them a synthesis that pooled it.
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
33 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Attitudes and beliefs regarding race-targeted genetic testing of Black people: A systematic review.Journal of genetic counseling · 2023Pooled it
- Patients offered genomic testing for rare disease and cancer: a real-world evaluation of impact and processes of care.European journal of human genetics : EJHG · 2026Article
- Experiences accessing and receiving tumour genetic profiling in Victoria: a consumer-led cross-sectional survey study.BMC cancer · 2026Article
- Restraints on Personal Utility in Genomic Testing.The American journal of bioethics : AJOB · 2026Article
- Recommended approaches to sharing individual research results in Alzheimer's disease research: A multidisciplinary expert Delphi consensus.Journal of Alzheimer's disease : JAD · 2025Article
- The case for integrating genetic counselors into primary care: A paradigm shift for our profession.Journal of genetic counseling · 2025Article
- Article
- Parental perspectives regarding the return of genomic research results in neurodevelopmental disorders in South Africa: anticipated impact and preferences.Journal of community genetics · 2024Article
- What Do Patients With Cancer Know, or Want to Know, About Genomic Tumor Sequencing and Genetic Testing? A State-of-the-Art Review.Journal of the advanced practitioner in oncology · 2024Review
- Publics' knowledge of, attitude to and motivation towards health-related genomics: a scoping review.European journal of human genetics : EJHG · 2024Article
- Parental Perspectives Regarding the Return of Genomic Research Results in Neurodevelopmental Disorders in South Africa: Anticipated Impact and Preferences.Research square · 2024Article
- Development of a novel measure of advanced cancer patients' perceived utility of secondary germline findings from tumor genomic profiling.PEC innovation · 2023Article
- Determining the utility of diagnostic genomics: a conceptual framework.Human genomics · 2023Review
- 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
- Experiences of Families Caring for Children with Newborn Screening-Related Conditions: Implications for the Expansion of Genomics in Population-Based Neonatal Public Health Programs.International journal of neonatal screening · 2022Article
- Parental motivations for and adaptation to trio-exome sequencing in a prospective prenatal testing cohort: Beyond the diagnosis.Prenatal diagnosis · 2022Article
- Patient and public understanding of the concept of 'personalised medicine' in relation to cancer treatment: a systematic review.Future healthcare journal · 2021Review
- Patients' and professionals' views related to ethical issues in precision medicine: a mixed research synthesis.BMC medical ethics · 2021Review
- Patients' and Oncologists' Knowledge and Expectations Regarding Tumor Multigene Next-Generation Sequencing: A Narrative Review.The oncologist · 2021Review
- Implementation matters: How patient experiences differ when genetic counseling accompanies the return of genetic variants of uncertain significance.AMIA ... Annual Symposium proceedings. AMIA Symposium · 2021Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
3 authors.
Funding
Abstract
The value of genomic sequencing is often understood in terms of its ability to affect diagnosis or treatment. In these terms, successes occur only in a minority of cases. This paper presents views from patients who had exome sequencing done clinically to explore how they perceive the utility of genomic medicine. The authors used semi-structured, qualitative interviews in order to study patients' attitudes toward genomic sequencing in oncology and rare-disease settings. Participants from 37 cases were interviewed. In terms of the testing's key values-regardless of having received what clinicians described as meaningful results-participants expressed four qualities that are separate from traditional views of clinical utility: Participants felt they had been empowered over their own health. They felt they had contributed altruistically to the progress of genomic technology in medicine. They felt their suffering had been legitimated. They also felt a sense of closure, having done everything they could. Patients expressed overwhelmingly positive attitudes toward sequencing. Their rationale was not solely based on the results' clinical utility. It is important for clinicians to understand this non-medical reasoning as it pertains to patient decision-making and informed consent.
Indexed as
Identifiers
What OpenQuestion holds
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.