ArticleJournal of health care law & policy2017
REFUTING THE RIGHT NOT TO KNOW.
Article in Journal of health care law & policy, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 11 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
11 citing papers in PubMed.
- Diagnostic investigations: harmless tests or booby traps?Diagnosis (Berlin, Germany) · 2026Article
- The Arrival of Exome Sequencing in French Prenatal Diagnosis: An Exploratory Qualitative Study Among Professionals in Prenatal Diagnosis Centers: Prenatome-SHS.Prenatal diagnosis · 2026Article
- Cascade counselling and testing. Recommendations of the European Society of Human Genetics.European journal of human genetics : EJHG · 2026Article
- Return of Results in Genomic Research Using Large-Scale or Whole Genome Sequencing: Toward a New Normal.Annual review of genomics and human genetics · 2023Review
- Implementing Expanded Prenatal Genetic Testing: Should Parents Have Access to Any and All Fetal Genetic Information?The American journal of bioethics : AJOB · 2022Article
- When Not to Ask: A Defense of Choice-Masking Nudges in Medical Research.Journal of health care law & policy · 2022Article
- Exploring the motivations of research participants who chose not to learn medically actionable secondary genetic findings about themselves.Genetics in medicine : official journal of the American College of Medical Genetics · 2021Article
- An ethical framework for genetic counseling in the genomic era.Journal of genetic counseling · 2020Article
- Reconceptualizing harms and benefits in the genomic age.Personalized medicine · 2018Article
- Recontacting or not recontacting? A survey of current practices in clinical genetics centres in Europe.European journal of human genetics : EJHG · 2018Article
- Incidental Findings in Low-Resource Settings.The Hastings Center report · 2018Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
1 author.
Funding
Abstract
While promising to eventually revolutionize medicine, the capacity to cheaply and quickly generate an individual's entire genome has not been without controversy. Producing information on this scale seems to violate some of the accepted norms governing the practice of medicine, norms that evolved during the early years of genetic testing when a targeted paradigm dominated. One of these widely accepted norms was that an individual had a right not to know genetic information about him or herself. Prompted by evolving professional practice guidelines, the right not to know has become a highly controversial topic. The medical community and bioethicists are actively engaged in a contentious debate about the extent to which individual choice should play a role (if at all) in determining which clinically significant findings are returned. This paper explores the extent to which it is legally and ethically necessary to respect the so-called right not to know genetic information about oneself. Challenging the majority view that the right not to know is sacrosanct, I push back against that vigorously held (although not always rigorously defended) position, in defense of the idea that we should abandon the notion of a strong right not to know. Drawing on the fields of law, philosophy and social science, I provide an extended argument in support of a default for returning high value genetic information without asking about a preference not to know. I conclude by offering some recommendations about how best to balance individual autonomy and professional beneficence as the field of genomic medicine continues to evolve.
Identifiers
37033891PMC10078625What 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.