Evidence map›Paper›PMID 30864046›Full record

ArticleScience and engineering ethics2019

Genetic Data, Two-Sided Markets and Dynamic Consent: United States Versus France.

Henri-Corto Stoeklé, Mauro Turrini, Philipe Charlier, Jean-François Deleuze, Christian Hervé, Guillaume Vogt

Abstract read
PubMed Publisher
In one paragraph

Article in Science and engineering ethics, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.

0numbers the graph read from it
0cells of the map it votes in
2citing 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

2 citing papers in PubMed.

  1. Dynamic consent and personalised medicine.The Medical journal of Australia · 2022
    Article
  2. 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

6 authors.

Henri-Corto StoekléLaboratory of Neglected Human Genetics (NHG), CNRGH-CEA, Evry, France.
Mauro TurriniUniversité de Nantes - Maison des Sciences de l'Homme (MSH), Nantes, France.
Philipe CharlierDépartement de la Recherche et de l'Enseignement, Musée du Quai Branly - Jacques Chirac, 222 rue de l'Université, 75007, Paris, France.
Jean-François DeleuzeCentre National de Recherche en Génomique Humaine (CNRGH), Direction de la recherche fondamentale, CEA, Institut de biologie François Jacob, Université Paris Saclay, Evry, France.
Christian HervéInternational Academy of Ethics, Medicine and Public Health, Paris Descartes University, Paris, France.
Guillaume VogtLaboratory of Neglected Human Genetics (NHG), CNRGH-CEA, Evry, France. guillaume.vogt@inserm.fr.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Networks for the exchange and/or sharing of genetic data are developing in many countries. We focus here on the situations in the US and France. We highlight some recent and remarkable differences between these two countries concerning the mode of access to, and the storage and use of genetic data, particularly as concerns two-sided markets and dynamic consent or dynamic electronic informed consent (e-IC). This brief overview suggests that, even though the organization and function of these two-sided markets remain open to criticism, dynamic e-IC should be more widely used, especially in France, if only to determine its real effectiveness.

Indexed as

Informed ConsentPatient Access to RecordsBiological Specimen BanksDatabases, GeneticFranceHumansUnited StatesDynamic e-ICGenetic dataTwo-sided market

Identifiers

PMID30864046

What OpenQuestion holds

Textmetadata
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.