Evidence map›Paper›PMID 19826451›Full record

ArticleEuropean journal of human genetics : EJHG2010

Comparison of participant information and informed consent forms of five European studies in genetic isolated populations.

Deborah Mascalzoni, A Cecile J W Janssens, Alison Stewart, Peter Pramstaller, Ulf Gyllensten, Igor Rudan, Cornelia M van Duijn, James F Wilson, Harry Campbell, Ruth M C Quillan and 1 more

Abstract readComparative Study
In one paragraph

Article in European journal of human genetics : EJHG, 2010. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 19 papers.

0numbers the graph read from it
0cells of the map it votes in
19citing 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

19 citing papers in PubMed.

  1. Trial
  2. Identification of genetic variants influencing the human plasma proteome.Proceedings of the National Academy of Sciences of the United States of America · 2013
    Trial
  3. Article
  4. Article
  5. Article
  6. Informed Consent in the Newly Established Biobank.International journal of environmental research and public health · 2019
    Article
  7. Article
  8. Article
  9. Article
  10. Article
  11. Article
  12. Practical barriers and ethical challenges in genetic data sharing.International journal of environmental research and public health · 2014
    Article
  13. Article
  14. Article
  15. Article
  16. Article
  17. Article
  18. Article
  19. 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

11 authors.

Deborah MascalzoniInstitute of Genetic Medicine, European Academy Bozen/Bolzano (EURAC), Bolzano, Italy. deborah.mascalzoni@eurac.edu
A Cecile J W Janssens
Alison Stewart
Peter Pramstaller
Ulf Gyllensten
Igor Rudan
Cornelia M van Duijn
James F Wilson
Harry Campbell
Ruth M C Quillan
EUROSPAN consortium

Funding

Chief Scientist Office CZB/4/710
6 · The paper itself

Abstract

Family-based research in genetically isolated populations is an effective approach for identifying loci influencing variation in disease traits. In common with all studies in humans, those in genetically isolated populations need ethical approval; however, existing ethical frameworks may be inadequate to protect participant privacy and confidentiality and to address participants' information needs in such populations. Using the ethical-legal guidelines of the Council for International Organizations of Medical Sciences (CIOMS) as a template, we compared the participant information leaflets and consent forms of studies in five European genetically isolated populations to identify additional information that should be incorporated into information leaflets and consent forms to guarantee satisfactorily informed consent. We highlight the additional information that participants require on the research purpose and the reasons why their population was chosen; on the potential risks and benefits of participation; on the opportunities for benefit sharing; on privacy; on the withdrawal of consent and on the disclosure of genetic data. This research raises some important issues that should be addressed properly and identifies relevant types of information that should be incorporated into information leaflets for this type of study.

Indexed as

AdolescentAdultAgedAged, 80 and overConsent FormsEthnicityEuropeHumansMiddle AgedPatient ParticipationPatient SelectionPractice Guidelines as TopicSocieties, MedicalYoung Adult

Identifiers

PMID19826451
PMCPMC2987217

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.