Evidence map›Paper›PMID 37699995›Full record

ArticleEuropean journal of human genetics : EJHG2023

The reuse of genetic information in research and informed consent.

David Lorenzo, Montse Esquerda, Margarita Bofarull, Victoria Cusi, Helena Roig, Joan Bertran, Joan Carrera, Francesc Torralba, Francisco José Cambra, Martí Vila and 2 more

Abstract read
In one paragraph

Article in European journal of human genetics : EJHG, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 5 papers.

0numbers the graph read from it
0cells of the map it votes in
5citing 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

5 citing papers in PubMed.

  1. Article
  2. Article
  3. Review
  4. Ambivalence and regret in genome sequencing.European journal of human genetics : EJHG · 2023
    Article
  5. 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

12 authors.

David LorenzoInstitut Borja de Bioetica, Universitat Ramon Llull, Barcelona, Spain.
Montse EsquerdaInstitut Borja de Bioetica, Universitat Ramon Llull, Barcelona, Spain. mesquerda@ibb.url.edu.ORCID 0000-0002-5781-8298
Margarita BofarullInstitut Borja de Bioetica, Universitat Ramon Llull, Barcelona, Spain.ORCID 0000-0001-8215-4115
Victoria CusiInstitut Borja de Bioetica, Universitat Ramon Llull, Barcelona, Spain.
Helena RoigInstitut Borja de Bioetica, Universitat Ramon Llull, Barcelona, Spain.
Joan BertranInstitut Borja de Bioetica, Universitat Ramon Llull, Barcelona, Spain.ORCID 0000-0001-8553-0534
Joan CarreraInstitut Borja de Bioetica, Universitat Ramon Llull, Barcelona, Spain.
Francesc TorralbaInstitut Borja de Bioetica, Universitat Ramon Llull, Barcelona, Spain.
Francisco José CambraInstitut Borja de Bioetica, Universitat Ramon Llull, Barcelona, Spain.
Martí VilaInstitut Borja de Bioetica, Universitat Ramon Llull, Barcelona, Spain.
Martina GarrigaInstitut Borja de Bioetica, Universitat Ramon Llull, Barcelona, Spain.
Francesc PalauDepartment of Genetic Medicine and Pediatric Institut of Rare Diseases, Hospital Sant Joan de Déu, Barcelona, Spain.ORCID 0000-0002-8635-5421

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Important advances in genetics research have been made in recent years. Such advances have facilitated the availability of huge amounts of genetic information that could potentially be reused beyond the original purpose for which such information was obtained. Any such reuse must meet certain ethical criteria to ensure that the dignity, integrity, and autonomy of the individual from whom that information was obtained are protected. The aim of this paper is to reflect on these criteria through a critical analysis of the literature. To guarantee these values, ethical criteria need to be established in several respects. For instance, the question must be posed whether the information requires special attention and protection (so-called genetic exceptionalism). Another aspect to bear in mind is the most appropriate type of consent to be given by the person involved, on the one hand favouring research and the reuse of genetic information while on the other protecting the autonomy of that person. Finally, there is a need to determine what protection such reuse should have in order to avoid detrimental consequences and protect the rights of the individual. The main conclusions are that genetic information requires special care and protection (genetic exceptionalism) and that broad consent is the most practical and trustworthy type of consent for the reuse of genetic information.

Indexed as

Genetic PrivacyGenetic TestingInformed ConsentHumans

Identifiers

PMID37699995
PMCPMC10689789

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.