Evidence map›Paper›PMID 40728253›Full record

ArticleAmerican journal of medical genetics. Part A2025

Outcomes from a Novel Approach to Studying Consumer Genetic Testing for Germline Cancer and Cardiovascular Risk.

Madison K Kilbride, Daniel Chavez-Yenter, Bob Wong, J Scott Roberts, Jacqueline Park, Jason Iuliano, Angela R Bradbury

Abstract read
In one paragraph

Article in American journal of medical genetics. Part A, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

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

0 citing papers in PubMed.

No citing paper in PubMed yet.

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, Utah, USA.ORCID 0000-0002-8923-9944
Daniel Chavez-YenterDepartment of Medical Ethics and Health Policy, University of Pennsylvania, Philadelphia, Pennsylvania, USA.
Bob WongCollege of Nursing, University of Utah, Salt Lake City, Utah, USA.
J Scott RobertsDepartment of Health Behavior & Health Equity, School of Public Health, University of Michigan, Ann Arbor, Michigan, USA.ORCID 0000-0003-1083-8299
Jacqueline ParkCollege of Engineering, University of Utah, Salt Lake City, Utah, USA.
Jason IulianoS.J. Quinney College of Law, University of Utah, Salt Lake City, Utah, USA.
Angela R BradburyDepartment of Medical Ethics and Health Policy, University of Pennsylvania, Philadelphia, Pennsylvania, USA.

Funding

Evaluating the Risks and Benefits of the Next Generation of Direct-to-Consumer Genetic TestsK01HG010903 · NHGRI · UNIVERSITY OF UTAH · PI KILBRIDE, MADISON K · 2020 to 2023
$695k
NHGRI NIH HHS K01 HG010903NIH HHS K01 HG010903
6 · The paper itself

Abstract

Despite the growing availability of consumer genetic testing for serious disease risks, outcomes data remain limited for individuals undergoing testing for high- and moderate-penetrance genes. To address this gap, we evaluated the feasibility of the Consumer Genetic Testing Outcomes Evaluation Paradigm (CGT-OEP), a novel approach for studying cognitive, affective, and behavioral outcomes in individuals pursuing physician-mediated genetic testing. We recruited participants to purchase Color Health's genetic test for cancer and cardiovascular disease risk. Participants completed Baseline (T0), Pre-Disclosure (T1), and Two-Week Post-Disclosure (T2) surveys and shared results with the study team. Of 185 consented participants, 105 (56.8%) purchased tests, with 103 (98.1%) completing all requirements. Purchasers were predominantly white (89%), female (73%), and college-educated (80%). Participants reported high satisfaction and minimal negative emotions, uncertainty, or decisional regret; most (n = 67, 65%) planned to share results with providers. Although genetic knowledge increased and anxiety decreased post-disclosure, many participants misinterpreted negative and VUS results as indicating lower-than-average risk for cancer (n = 41, 42%) and cardiovascular disease (n = 45, 46%). Our findings demonstrate that the CGT-OEP is a feasible, effective approach for studying consumer genetic testing. While participants reported positive experiences, findings highlight concerns about result comprehension and potential false reassurance, particularly for negative/VUS results.

Indexed as

Cardiovascular DiseasesGenetic TestingNeoplasmsAdultAgedFemaleGenetic Predisposition to DiseaseGerm-Line MutationHumansMaleMiddle AgedSurveys and Questionnairescancer geneticscardiovascular geneticsconsumer genetic testingpatient‐reported outcomesphysician‐mediated genetic testing

Identifiers

PMID40728253
PMCPMC12818545

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.