sábado, 22 de junio de 2024
Research biobank participants attitudes towards genetic exceptionalism and health record confidentiality. Victoria Dortenzio et al. J Community Genet 2024 3 (Posted Apr 08, 2024 9AM)
https://phgkb.cdc.gov/PHGKB/specificPHGKB.action?topic=fhh&query=home
From the abstract: "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. "
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