ArticleThe American journal of bioethics : AJOB2026
The Concept of Personal Utility in Genomic Testing: Three Ethical Tensions.
Article in The American journal of bioethics : AJOB, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 4 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
4 citing papers in PubMed.
- Caring for Rare Genetic Disease: A Vision for the Future.Journal of genetic counseling · 2026Article
- How parents and community care professionals use a genetic diagnosis to inform care: expanding the concept of utility.Journal of community genetics · 2026Article
- Restraints on Personal Utility in Genomic Testing.The American journal of bioethics : AJOB · 2026Article
- Whose Values Define Value? Procedural Justice and the Personal Utility of Clinical Genomic Testing.The American journal of bioethics : AJOB · 2026Article
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Authors and funding
2 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Health Technology Assessment (HTA) has traditionally focused on efficacy, safety, and cost-effectiveness. There has long been concern, however, that this is determined by the goals of healthcare providers/payers, not patients. As a result, HTA arguably fails to reflect the overall value of health technologies-including their "non-clinical" or "personal" utility to patients and their families. The use of genomic testing in clinical care is one domain where this problem is evident, as the personal utility of results is often especially significant. As such, there are growing calls for HTA frameworks to adopt personal utility as a distinct element of value when assessing clinical genomic tests. We agree that personal utility is important to HTA in clinical genomics. However, against a trend toward comprehensive conceptions of personal utility within HTA, we advocate for a restrictive approach to assessing the value of personal utility in the case of clinical genomic testing.
Indexed as
Identifiers
40100620What 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.