Evidence map›Paper›PMID 31856388›Full record

ArticleJournal of genetic counseling2020

An ethical framework for genetic counseling in the genomic era.

Leila Jamal, Will Schupmann, Benjamin E Berkman

Open access · greenAbstract read
In one paragraph

Article in Journal of genetic counseling, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 44 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
44citing papers in PubMed, 1 pooled it
4.1field-weighted citation impact, top 6% of its field
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

44 citing papers in PubMed, 1 synthesis or guideline pooled it, 84 citations in OpenAlex.

  1. Pooled it
  2. Trial
  3. Article
  4. Article
  5. Article
  6. Stigma: an inherited blame.Journal of community genetics · 2026
    Article
  7. Article
  8. Review
  9. Article
  10. Article
  11. Article
  12. Navigating an Uninformative Genomic Test Result: A Practical Guide.Journal of paediatrics and child health · 2025
    Review
  13. Review
  14. Article
  15. Actionability of Genetic Variants in Diabetes: Core Aspects and Applied Examples.Diabetes spectrum : a publication of the American Diabetes Association · 2025
    Article
  16. Non-Invasive Prenatal Testing (NIPT): A Paradigm Shift in Prenatal Care.International journal of preventive medicine · 2025
    Review
  17. Article
  18. Review
  19. Review
  20. Review
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

3 authors at 1 institution in 1 country.

Leila JamalDepartment of Bioethics, Clinical Center, National Institutes of Health, Bethesda, Maryland.
Will SchupmannDepartment of Bioethics, Clinical Center, National Institutes of Health, Bethesda, Maryland.
Benjamin E BerkmanDepartment of Bioethics, Clinical Center, National Institutes of Health, Bethesda, Maryland.
National Institutes of Health Clinical Center · US

Funding

Intramural NIH HHS Z99 AI999999
6 · The paper itself

Abstract

The field of genetic counseling has grown and diversified since the profession emerged in the early 1970s. In the same period, genomic testing has become more complex, profitable, and widespread. With these developments, the scope of ethical considerations relevant to genetic counseling has expanded. In light of this, we find it helpful to revisit how ethical and relational variables are used to inform genetic counseling practice. Our specific focus is on whether, and to what extent, it is ethically acceptable for genetic counselors to make normative recommendations to patients. This article builds on prior literature that has critiqued nondirectiveness, a concept that has influenced and constrained the modern profession of genetic counseling since its origin. In it, we review scholarly efforts to move beyond nondirectiveness, which we believe privilege patient autonomy at the expense of other important values. We then argue that genetic counselors should favor a more explicit commitment to the principles of beneficence and non-maleficence, as well as a broader understanding of autonomy and the relational variables that impact genetic counseling. Finally, to translate our arguments into practice, we present a framework of six considerations that genetic counselors should take into account when deciding whether it is ethically acceptable, or even desirable, to make recommendations to patients in certain areas of their work.

Indexed as

Ethics, ProfessionalGenome, HumanCounselorsGenetic CounselingHumanscounseling techniquescultural competenceethicsgenetic counselinggenetics servicesgenome sequencingpractice modelsprofessional development

Identifiers

PMID31856388
PMCPMC7302959
OpenAlexW2996244321

What OpenQuestion holds

Textmetadata
LicenceTDM
Read underepoch 390

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.