ArticleJournal of community genetics2024
Research biobank participants attitudes towards genetic exceptionalism and health record confidentiality.
Article in Journal of community genetics, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.
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
3 citing papers in PubMed.
- Maternal perspectives on sharing newborn genomic data.European journal of human genetics : EJHG · 2026Article
- Safeguarding patient privacy in eHealth systems: Bridging theory and practice through a scoping review and healthcare survey.PLOS digital health · 2026Article
- Genetic exceptionalism and genomic contextualism among Asian Americans: a qualitative study.Journal of community genetics · 2025Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
4 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Understanding attitudes towards genetic exceptionalism and confidentiality is important in guiding policies regarding special protections for genetic/genomic information stored in electronic health records (EHR). The goals of this study were to determine biobank participants' attitudes towards genetic exceptionalism and confidentiality and whether those attitudes are related to their preference for return of genetic results. An online questionnaire was distributed to patients with an EHR and email address who had previously enrolled in the BioMe Biobank program. Most participants responded with similar levels of concern in scenarios involving the use of genetic information and other types of health information, suggesting that participants want similar protections for genetic data as other types of sensitive health information, particularly mental health and family history records. Of the 829 respondents, the majority had genetic exceptionalist views when directly asked, even though their concerns about confidentiality were similar for their genetic information and other health information. There were no differences in genetic exceptionalist views between those who had a documented preference to have genetic results returned and those who did not. Notably, for many participants, their recall of preference did not align with their documented preference. The majority of biobank participants were most anxious about the loss of confidentiality for genetic, mental health, and family history information, indicating that certain types of health information are considered more "sensitive" than others. These findings suggest the importance of assuring people participating in biobank research that the confidentiality of their "sensitive" health information is secured.
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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.