Informed consent
Is there a right not to know uncertain genetic findings?
Open access · cc by · source: Europe PMC
The author argues that genetic findings of uncertain significance are not really knowledge, so the familiar debate over a right not to know misses the point, though people may decline to be told them.
Study at a glance
- Design
- Qualitative / archival — Conceptual analysis that reviews each major argument for and against a right not to know and tests it against incidental findings of uncertain significance.
- N
- No participants or data; a single-author argument paper.
- Population
- Incidental findings of uncertain significance from exome and genome sequencing, and the debate over a right not to know
- Outcome
- Thesis that most arguments for and against a right not to know fail for such findings, though a right not to be informed about them is supported
Structured fields used in claim comparison tables when every cited study has a complete layer.
Key findings
Arguments against a right not to know mostly assume the information could save a life, which fails when a finding is neither reliable nor actionable. Arguments for the right mostly assume the information is harmful knowledge, but they at best support a narrower right not to be informed about such findings. The author concludes that the real questions are whether a result can be trusted and whether anything can be done about it.
Methodology
The author defines incidental findings of uncertain significance as test results that are neither accurate nor actionable, then works through the main arguments against a right not to know (best interest, others' rights, feasibility, the value of knowledge, professional duty, law) and for it (avoiding harm, flourishing, autonomy, privacy, empirical choices, absence of duties). Each is tested against such findings, illustrated by a case of a healthy woman told of a stomach-cancer gene variant with unclear meaning.
Limitations
The author says the review of arguments is not exhaustive and the conclusion is inconclusive about the right not to know in general. The argument works partly by definition, stipulating that these findings are not accurate or actionable, and how many real results fit that category is left as an empirical question. Whether disclosure of such findings actually harms people or reduces autonomy is not tested; the author calls for empirical studies.
How this study connects
Role on claims
Each row is a claim on a concept or method page where this paper supports, challenges, or qualifies the statement. Roles are hand-checked — not a model guess.
Before asking 'to know or not to know', ask whether the finding means anything.
For incidental genomic findings that are neither reliable nor actionable, arguments against a right not to know fail (they assume the information could save a life), while arguments for it support at most a narrower right not to be informed; the real questions are whether a result can be trusted and whether anything can be done.
Evidence for the claim as stated.
History
When this study was placed
Dated entries from the concept change log — when this paper was added or removed as support, challenge, or qualifier on a claim.
Placed as supporting evidence on Informed consent
For incidental genomic findings that are neither reliable nor actionable, arguments against a right not to know fail (they assume the information could save a life), while arguments for it support at most a narrower right not to be informed; the real questions are whether a result can be trusted and whether anything can be done.
Related papers in this topic
Same topic cluster — not a recommendation engine.