Evidence map›Paper›PMID 22194036›Full record

ArticleJournal of genetic counseling2012

Informed choice in direct-to-consumer genetic testing (DTCGT) websites: a content analysis of benefits, risks, and limitations.

Amanda Singleton, Lori Hamby Erby, Kathryn V Foisie, Kimberly A Kaphingst

Abstract read
In one paragraph

Article in Journal of genetic counseling, 2012. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 26 papers, 2 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
26citing papers in PubMed, 2 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

26 citing papers in PubMed, 2 syntheses or guidelines pooled it.

  1. Guideline
  2. Pooled it
  3. Article
  4. Article
  5. Article
  6. Article
  7. Article
  8. Observational
  9. Cascading After Peridiagnostic Cancer Genetic Testing: An Alternative to Population-Based Screening.Journal of clinical oncology : official journal of the American Society of Clinical Oncology · 2020
    Article
  10. WHY WE FEAR GENETIC INFORMANTS: USING GENETIC GENEALOGY TO CATCH SERIAL KILLERS.The Columbia science and technology law review · 2019
    Article
  11. A systematic analysis of online marketing materials used by providers of expanded carrier screening.Genetics in medicine : official journal of the American College of Medical Genetics · 2018
    Article
  12. Article
  13. Article
  14. Article
  15. Article
  16. Third party interpretation of raw genetic data: an ethical exploration.European journal of human genetics : EJHG · 2017
    Review
  17. Article
  18. Review
  19. 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

4 authors.

Amanda SingletonGeneDx, Gaithersburg, MD, USA.
Lori Hamby Erby
Kathryn V Foisie
Kimberly A Kaphingst

Funding

Communication of Genetic and Genomic Information to Lay AudiencesZ01HG200321 · NHGRI · NATIONAL HUMAN GENOME RESEARCH INSTITUTE · PI KAPHINGST, KIMBERLY A · 2005 to 2008
$1.8M
Intramural NIH HHS Z01 HG200321
6 · The paper itself

Abstract

An informed choice about health-related direct-to-consumer genetic testing (DTCGT) requires knowledge of potential benefits, risks, and limitations. To understand the information that potential consumers of DTCGT services are exposed to on company websites, we conducted a content analysis of 23 health-related DTCGT websites. Results revealed that benefit statements outweighed risk and limitation statements 6 to 1. The most frequently described benefits were: 1) disease prevention, 2) consumer education, 3) personalized medical recommendations, and 4) the ability to make health decisions. Thirty-five percent of websites also presented at least one risk of testing. Seventy-eight percent of websites mentioned at least one limitation of testing. Based on this information, potential consumers might get an inaccurate picture of genetic testing which could impact their ability to make an informed decision. Practices that enhance the presentation of balanced information on DTCGT company websites should be encouraged.

Indexed as

Choice BehaviorCommunity ParticipationGenetic TestingInformed ConsentInternetHumans

Identifiers

PMID22194036
PMCPMC3348288

What OpenQuestion holds

Textmetadata
LicenceTDM
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.