Evidence map›Paper›PMID 39050249›Full record

ArticleFrontiers in genetics2024

Test-takers' perspectives on consumer genetic testing for hereditary cancer risk.

Madison K Kilbride, Lisa Jay Kessler, Brigitte Cronier, Jacqueline J Park, Cara N Cacioppo, Jordyn Beem, Angela R Bradbury

Abstract read
In one paragraph

Article in Frontiers in genetics, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 papers.

0numbers the graph read from it
0cells of the map it votes in
6citing 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

6 citing papers in PubMed.

  1. Article
  2. Article
  3. Article
  4. Article
  5. Article
  6. 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

7 authors.

Madison K KilbrideDepartment of Philosophy, University of Utah, Salt Lake City, UT, United States.
Lisa Jay KesslerMaster of Science Program in Genetic Counseling, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, United States.
Brigitte CronierMaster of Science Program in Genetic Counseling, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, United States.
Jacqueline J ParkKahlert School of Computing, University of Utah, Salt Lake City, UT, United States.
Cara N CacioppoPenn Telegenetics Program, University of Pennsylvania, Philadelphia, PA, United States.
Jordyn BeemUniversity of Louisville, Louisville, KY, United States.
Angela R BradburyDivision of Hematology-Oncology, Abramson Cancer Center, University of Pennsylvania, Philadelphia, PA, United States.

Funding

The Penn Postdoctoral Training Program in the Ethical, Legal and Social Implications of Genetics and GenomicsT32HG009496 · NHGRI · UNIVERSITY OF PENNSYLVANIA · PI Steven Joffe · 2017 to 2026
$3.4M
GURU: Graduate and Undergraduate Researchers of UCEERR25HG010020 · NHGRI · UNIVERSITY OF UTAH · PI KILBRIDE, MADISON K, TABERY, JAMES · 2018 to 2023
$751k
NHGRI NIH HHS R25 HG010020NHGRI NIH HHS T32 HG009496
6 · The paper itself

Abstract

Purpose: With few exceptions, research on consumer genetic testing for hereditary cancer risk has focused on tests with limited predictive value and clinical utility. Our study advances the existing literature by exploring the experiences and behaviors of individuals who have taken modern consumer genetic tests for cancer susceptibility that, unlike earlier tests, screen for medically significant variants. Methods: We interviewed 30 individuals who had undergone consumer genetic testing for hereditary cancer risk between 2014 and 2019. We explored participants' pre-test sentiments (7 items), experiences receiving results (5 items), behavioral and health-related changes (6 items), and attitudes and beliefs (3 items). Data were analyzed for thematic content. Results: Most participants reported a personal (n = 6) and/or family history (n = 24) of cancer, which influenced their choice to pursue testing. Before testing, most participants did not consult with a physician (n = 25) or receive genetic counseling (n = 23). Nevertheless, the majority felt that they understood test-related information (n = 20) and their results (n = 20), though a considerable number reported experiencing negative emotions related to their results. Most also shared their results with family members (n = 27). Overall, participants' attitudes towards consumer genetic testing for cancer risk were predominantly positive (n = 23). Conclusion: This study offers new insights into how individuals use and perceive modern consumer genetic tests for hereditary cancer risk, focusing on their perceptions of the risks, benefits, and limitations of these services. Understanding test-takers' perspectives can potentially inform improvements aimed at ensuring that tests meet users' needs and deliver clinically valuable genetic risk assessments.

Indexed as

behavioral changescancer riskconsumer genetic testinginterviewparticipant experiences

Identifiers

PMID39050249
PMCPMC11266061

What OpenQuestion holds

Textmetadata
LicenceCC BY
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.