Evidence map›Paper›PMID 31326898›Full record

ArticleJournal of medical ethics2019

The 'serious' factor in germline modification.

Erika Kleiderman, Vardit Ravitsky, Bartha Maria Knoppers

Abstract read
In one paragraph

Article in Journal of medical ethics, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 14 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
14citing papers in PubMed, 1 pooled it
–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

14 citing papers in PubMed, 1 synthesis or guideline pooled it.

  1. Pooled it
  2. Review
  3. Beyond severity: utility as a criterion for setting the scope of RGCS.European journal of human genetics : EJHG · 2025
    Article
  4. Editorial: severity in a genomic age.European journal of human genetics : EJHG · 2025
    Article
  5. Negotiating severity behind the scenes: prenatal testing in Germany.European journal of human genetics : EJHG · 2025
    Article
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  7. Review
  8. Article
  9. Article
  10. Review
  11. Review
  12. Article
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4 · The record

Corrections and comments

5 · Who and what money

Authors and funding

3 authors.

Erika KleidermanCentre of Genomics and Policy, McGill University, Montreal, Quebec, Canada.ORCID 0000-0002-0242-2296
Vardit RavitskyDepartment of Social and Preventive Medicine, School of Public Health, Université de Montréal, Montreal, Quebec, Canada.
Bartha Maria KnoppersCentre of Genomics and Policy, McGill University, Montreal, Quebec, Canada.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Current advances in assisted reproductive technologies aim to promote the health and well-being of future children. They offer the possibility to select embryos with the greatest potential of being born healthy (eg, preimplantation genetic testing) and may someday correct faulty genes responsible for heritable diseases in the embryo (eg, human germline genome modification (HGGM)). Most laws and policy statements surrounding HGGM refer to the notion of 'serious' as a core criterion in determining what genetic diseases should be targeted by these technologies. Yet, this notion remains vague and poorly defined, rendering its application challenging and decision making subjective and arbitrary. By way of background, we begin by briefly presenting two conceptual approaches to 'health' and 'disease': objectivism (ie, based on biological facts) and constructivism (ie, based on human values). The basic challenge under both is sorting out whether and to what extent social and environmental factors have a role in helping to define what qualifies as a 'serious' disease beyond the medical criteria. We then focus on how a human rights framework (eg, right to science and right to the highest attainable health) could integrate the concepts of objectivism and constructivism so as to provide guidance for a more actionable consideration of 'serious'. Ultimately, it could be argued that a human rights framework, by way of its legally binding nature and its globally accepted norms and values, provides a more universal foundation for discussions of the ethical, legal and social implications of emerging or disruptive technologies.

Indexed as

Genetic Predisposition to DiseaseDecision MakingEmbryo ResearchFemaleGene EditingGene TargetingGenetic CounselingGerm CellsHealth PolicyHuman RightsHumansPregnancyReproductive Techniques, Assistedconcept of healthethicsgene therapy/transfergenethicsgenetic engineering

Identifiers

PMID31326898
PMCPMC6820154

What OpenQuestion holds

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LicenceCC BY-NC
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.