Evidence map›Paper›PMID 40319871›Full record

ArticlePublic health genomics2025

Workplace Genomic Testing: What Do Company Websites Say about Federal Privacy and Anti-Discrimination Laws?

Betty Cohn, Anya E R Prince, Katherine Callahan, J Scott Roberts, Alyx Vogle, Debra J H Mathews, INSIGHT @ Work Consortium

Abstract read
In one paragraph

Article in Public health genomics, 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.

Betty CohnInstitute for Public Health Genetics, University of Washington, Seattle, Washington, USA, bcohn@uw.edu.
Anya E R PrinceCollege of Law, University of Iowa, Iowa City, Iowa, USA.
Katherine CallahanDepartment of Biology, Colby College, Waterville, Maine, USA.
J Scott RobertsDepartment of Health Behavior and Health Equity, University of Michigan, School of Public Health, Ann Arbor, Michigan, USA.
Alyx VogleDepartment of Cardiology, Brigham and Women's Hospital, Boston, Massachusetts, USA.
Debra J H MathewsDepartment of Genetic Medicine, Johns Hopkins University, Baltimore, Maryland, USA.
INSIGHT @ Work Consortium

Funding

Genetic Counselors and Workplace Genomic TestingR01HG010679 · NHGRI · JACKSON LABORATORY · PI LEE, CHARLES, ROBERTS, SCOTT · 2020 to 2023
$3.7M
Genetic data partnerships: Enabling equitable access within academic/private data sharing agreementsK01HG010496 · NHGRI · UNIVERSITY OF MICHIGAN AT ANN ARBOR · PI SPECTOR-BAGDADY, KAYTE KELLEHER · 2019 to 2023
$875k
NHGRI NIH HHS K01 HG010496NHGRI NIH HHS R01 HG010679
6 · The paper itself

Abstract

introductionEmployees considering participation in workplace genetic and/or genomic testing (wGT) as part of workplace wellness programs should be aware of legal protections of their personal genetic information. Given the relevance of the Health Insurance Portability and Accountability Act (HIPAA) and the Genetic Information Nondiscrimination Act (GINA) for informed decision-making, employers offering wGT should ideally inform employees of these health policies prior to collecting any genetic data. It is unclear, however, whether and to what extent such information is being provided. Company websites provide one important resource for making employees - and the public at large - aware of important health policies governing workplace wellness programs in general, and wGT services in particular.

methodWe systematically reviewed the websites of 420 companies (including 140 privately held companies from the 2019 Forbes list of largest privately held companies, 140 publicly held companies from the 2019 Forbes list of largest publicly held companies, 104 hospitals/hospital systems, and 36 companies that had evidence that they offer/have offered wGT) offering wGT services to determine if they included reference to HIPAA and GINA.

resultsOur search for wGT programs on company websites found that 50 of 420 companies had evidence of offering wGT. We found 32/50 (64%) mentions of HIPAA and no mentions of GINA.

conclusionsIt is imperative that HIPAA and GINA are upheld by both vendors and employers. Accessible and understandable information on these policies is needed for employees to analyze the benefits and risks of participating in wGT.

Indexed as

Genetic PrivacyGenetic TestingInternetWorkplaceHealth Insurance Portability and Accountability ActHumansUnited StatesGenetic Information Nondiscrimination ActGenetic testingHealth Insurance Portability and Accountability ActWorkplace wellness

Identifiers

PMID40319871
PMCPMC12776532

What Socratic holds

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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 Socratic graph.