Evidence map›Paper›PMID 37033891›Full record

ArticleJournal of health care law & policy2017

REFUTING THE RIGHT NOT TO KNOW.

Benjamin E Berkman

Abstract read
In one paragraph

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.

0numbers the graph read from it
0cells of the map it votes in
11citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from 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.

2 · The registry

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.

3 · Its place in the literature

Who cites it

11 citing papers in PubMed.

  1. Article
  2. Article
  3. Article
  4. Review
  5. Article
  6. Article
  7. Article
  8. Article
  9. Article
  10. Article
  11. Incidental Findings in Low-Resource Settings.The Hastings Center report · 2018
    Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

1 author.

Benjamin E BerkmanDepartment of Bioethics at the National INST.s of Health, and is the Deputy Director of the Bioethics Core at the National Human Genome Research INST.

Funding

Intramural NIH HHS Z99 HG999999
6 · The paper itself

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

PMID37033891
PMCPMC10078625

What OpenQuestion holds

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Registered trials

None linked

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.