ELSIcon2024 • Paper • June 11, 2024
Authors:
Speaker: Ana Lucia Battaglino, MA (she/her/hers) – Harvard University
ELSIcon2024 • Paper • June 10, 2024
Authors:
Speaker: Josephine Johnston, LLB, MBHL (she/her/hers) – University of Otago and The Hastings Center
Project Narrative Racial/ethnic disparities in genomic testing and research participation threaten to exacerbate inequities in health outcomes, particularly in pediatrics.3-7 Given that current genomic privacy mechanisms (e.g., de-identification, broad consent) do not adequately address the concerns of historically disadvantaged populations related to genomic testing and research,1-3 there is an urgent need to understand the range of perspectives on genomic data privacy held by parents from diverse sociodemographic backgrounds.
Flatau and colleagues developed this survey to assess informational preferences among German patients, healthcare professionals, and members of the public in a genetic testing context. The survey assesses participant characteristics, preferences about the return of genetic results, attitudes about physician disclosure, and willingness to share test results.
This survey assesses views on aspects of the consent process, including willingness to share medical information and DNA for different research purposes, including controversial areas of research.
This short (3 minute) English language video provides information on Alzheimer's disease, including its genetic component. This video underscores Alzheimer's disease as a complex and multi-determined condition; it clarifies that predictive genetic testing offers a probability of developing the disease, not a definite result. For a study that utilizes this video: Pavarini, G., Hamdi, L., Lorimer, J., & Singh, I. (2021).