ArticleGenetics in medicine : official journal of the American College of Medical Genetics2021
The persistent lack of knowledge and misunderstanding of the Genetic Information Nondiscrimination Act (GINA) more than a decade after passage.
Article in Genetics in medicine : official journal of the American College of Medical Genetics, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. An erratum has been issued. Cited by 19 papers, 1 of them a synthesis that pooled 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.
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.
Who cites it
19 citing papers in PubMed, 1 synthesis or guideline pooled it.
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- Legal Protections to Mitigate Discrimination due to Neurodegenerative Biomarker Status.Neurology · 2026Review
- Public perceptions of genetic sequencing in China: barriers and drivers of adoption.European journal of human genetics : EJHG · 2026Article
- Views and experiences regarding workplace genetic testing: findings from a national survey of U.S. employees.Journal of community genetics · 2026Article
- Advancing Germline Genetic Testing for Breast Cancer in Resource-Restricted Settings: Evidence, Barriers, and a Practical Roadmap for Implementation.Breast cancer (Dove Medical Press) · 2026Review
- Reasons for refusal of genetic testing in the evaluation of autism spectrum disorder and intellectual developmental disorder with longitudinal follow-up on test completion.Genetics in medicine open · 2026Article
- Addressing genetic discrimination for stronger legal protections and enhanced public awareness.NPJ genomic medicine · 2025Article
- Cardiovascular genetic counselor decision making about discussing life insurance with patients.Journal of genetic counseling · 2025Article
- Multidisciplinary stakeholder-informed identification of key characteristics for implementation of workplace genetic testing.HGG advances · 2025Article
- Workplace perk or pitfall? A qualitative study of genetic counselors' perspectives and experiences with workplace genetic testing.Journal of genetic counseling · 2025Article
- The Genetic Information Nondiscrimination Act and workplace genetic testing: Knowledge and perceptions of employed adults in the United States.Journal of genetic counseling · 2025Article
- Workplace Genomic Testing: What Do Company Websites Say about Federal Privacy and Anti-Discrimination Laws?Public health genomics · 2025Article
- Review
- Community concerns about genetic discrimination in life insurance persist in Australia: A survey of consumers offered genetic testing.European journal of human genetics : EJHG · 2024Article
- Principles for Health Information Collection, Sharing, and Use: A Policy Statement From the American Heart Association.Circulation · 2023Review
- The effect of genetic education on the referral of patients to genetic evaluation: Findings from a national survey of nephrologists.Genetics in medicine : official journal of the American College of Medical Genetics · 2023Article
- Expectations, concerns, and attitudes regarding whole-genome sequencing studies: a survey of cancer patients, families, and the public in Japan.Journal of human genetics · 2023Article
- Genetic testing and insurance implications: Surveying the US general population about discrimination concerns and knowledge of the Genetic Information Nondiscrimination Act (GINA).Risk management and insurance review · 2021Article
Corrections and comments
- Erratum issued
Authors and funding
6 authors.
Funding
Abstract
purposeMore than a decade after the Genetic Information Nondiscrimination Act (GINA) was passed, there is a paucity of research on the general public's awareness of GINA. This study's objective was to assess knowledge of GINA and concerns of genetic discrimination.
methodsA quota-based sample of US adults (N = 421) was recruited via Qualtrics Research Services to complete an online survey.
resultsOverall, participants had a mean age of 43.1 (SD = 13.9), 51.8% identified as female, 63.1% identified as non-Hispanic White, and 38.4% had ≥4-year college degree. Respondents reported relatively low subjective knowledge of GINA (M = 3.10, SD = 1.98; 7-point Likert scale). Among respondents reporting high subjective knowledge of GINA (16.2%), 92.6% incorrectly reported or did not know that GINA does not covers life, long-term care, and disability insurance, and this number was 82.4% for auto or property insurance. Respondents were relatively likely to decline genetic testing due to concerns about results being used to determine eligibility for employment (M = 4.68, SD = 1.89) or health insurance (M = 4.94, SD = 1.73). There were few consistent demographic associations with either subjective or objective knowledge of GINA.
conclusionThis study highlights continued public concern about genetic discrimination and a lack of awareness and understanding of GINA and its scope of protections.
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Registered trials
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.