Video education about genetic privacy and patient perspectives about sharing prenatal genetic data: a randomized trial.

ABSTRACT:

Background

Laboratories offering cell-free DNA often reserve the right to share prenatal genetic data for research or even commercial purposes, and obtain this permission on the patient consent form. Although it is known that nonpregnant patients are often reluctant to share their genetic data for research, pregnant patients' knowledge of, and opinions about, genetic data privacy are unknown.

Objective

We investigated whether pregnant patients who had already undergone cell-free DNA screening were aware that genetic data derived from cell-free DNA may be shared for research. Furthermore, we examined whether pregnant patients exposed to video education about the Genetic Information Nondiscrimination Act-a federal law that mandates workplace and health insurance protections ag

SUBMITTER: Parobek CM 

PROVIDER: S-EPMC9339213 | biostudies-literature | 2022 Jul

REPOSITORIES: biostudies-literature