Is there a right not to know uncertain genetic findings?
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.
Source
Incidental findings of uncertain significance: To know or not to know--that is not the question
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.
What they did
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.
What they found
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.
The limits
What it doesn't show
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.
Key terms
- Right not to know
- A claimed entitlement to decline health or genetic information about oneself, recognised in some European regulation.
- Incidental finding of uncertain significance (IFUS)
- A test result found unintentionally whose accuracy and/or clinical actionability is unknown.
- Actionability
- Whether something can be done with a result that would improve the person's health.
- Data, information, knowledge
- The author's distinction: raw results are data, they may carry some information, but they are knowledge only if accurate or actionable.
- Is-ought fallacy
- Inferring what should be done purely from facts about what people do or prefer.
- Right to an open future
- The idea that a child's future options should be preserved, e.g. by deferring predictive testing until they can choose.
Flashcards
0 of 11 answers reviewed
Research intelligence for this paper
See its role on concept claims, tensions it is part of, placement history, and related discoveries.
Quiz yourself
What is the paper's main conclusion?
Common questions
Does the author say there is no right not to know at all?
No. The conclusion is limited to uncertain findings; the paper explicitly leaves the general right not to know unresolved.
Why is appealing to what most people want not decisive?
It reasons from preferences to obligations, and preference studies usually ask about accurate, actionable results rather than uncertain ones, so they do not settle this case.
What is the difference between a right not to know and a right not to be informed?
The first concerns declining genuine knowledge; the second is a narrower claim to refuse being given unreliable or useless results, which the author thinks several arguments do support.
More on Informed consent