Evidence map›Paper›PMID 20878544›Full record

ReviewJournal of genetic counseling2011

Can we make assumptions about the psychosocial impact of living as a carrier, based on studies assessing the effects of carrier testing?

Celine Lewis, Heather Skirton, Ray Jones

Abstract readReview
PubMed Publisher
In one paragraph

Review in Journal of genetic counseling, 2011. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 22 papers.

0numbers the graph read from it
0cells of the map it votes in
22citing 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

22 citing papers in PubMed.

  1. Trial
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  9. Review
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  11. Reactions to clinical reinterpretation of a gene variant by participants in a sequencing study.Genetics in medicine : official journal of the American College of Medical Genetics · 2018
    Article
  12. Article
  13. Article
  14. Review
  15. Review
  16. Article
  17. Article
  18. From genetic counseling to "genomic counseling".Molecular genetics & genomic medicine · 2013
    Article
  19. Response to Stoll and Resta.Genetics in medicine : official journal of the American College of Medical Genetics · 2013
    Article
  20. 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

3 authors.

Celine LewisGenetic Alliance UK, Unit 4D Leroy House, 436 Essex Road, London, UK. celine@geneticalliance.org.uk
Heather Skirton
Ray Jones

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Receiving the results of genetic carrier testing may have an impact on the psychosocial health of the individual. Numerous studies have been conducted to assess the psychosocial effects of carrier status for a range of conditions. To systematically review research focused on the psychological and social impact of carrier testing on individuals in order to identify factors affecting the impact of carrier testing results, and discern areas where further research is needed. Twenty relevant papers meeting criteria for inclusion in this review were found. The main themes identified across these studies included: anxiety, guilt and stigmatization, effect on family relationships, effect on self image, active coping mechanisms and reproductive issues. Variables related to the psychosocial effect of carrier testing included whether the carrier has an affected child, mode of inheritance, genetic counseling, and life stage. A key finding concerns carriers who already have an affected child; they are more likely to experience guilt and self-blame, and change their reproductive plans compared to carriers without affected children. Additionally, some participants reported clinical features of the disorder for which they were being tested. Genetic counselors may erroneously assume that parents with affected children are aware of their own carrier status in the absence of testing, and they may offer inadequate support. Additionally, counselors should attempt to address patient misconceptions related to their health and carrier status.

Indexed as

Genetic Carrier ScreeningAdaptation, PsychologicalGenetic TestingHumans

Identifiers

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.