This one-page consent form helps to faciliate consent and promote broad genomic data sharing in the clinical setting. The language use on the form is consistent with the NIH Genomic Data Sharing Policy and the NHGRI Informed Consent Resource. The consent form was developed by the Clinical Genome Resource (ClinGen), a not-for-profit, National Institutes of Health (NIH)-funded resource dedicated to sharing genetic data, building knowledge, and improving patient care. The file contains two pages; one with the ClinGen logo in the bottom corner and the other without the logo.
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).
PROJECT NARRATIVE Families with children who have identified deficits in speech and/or sensory or musculoskeletal impairments without a known cause may be referred for genetic testing to find out whether there is a genetic cause. However, there is little research into how parents and caregivers use this diagnosis to inform decisions about therapeutic services, access to school services, or how a genomic diagnosis informs the practice of the community professionals who provide these services.
PROJECT NARRATIVE The proposed K01 Award?'Evaluating the Risks and Benefits of the Next Generation of Direct-to-Consumer Genetic Tests??will enable the candidate to acquire the academic background, research experience, and professional skills to become an independent ELSI investigator exploring the risks and benefits of current and emerging direct-to-consumer (DTC) genetic tests.
Project Narrative This proposal seeks to investigate the ethical, social, and policy implications of a new kind of genetic information currently available to the public: polygenic scores for educational attainment (EA-PGS).
PROJECT NARRATIVE: Genetic counseling and health education are essential components of any early diagnosis program for sickle cell disease to ensure that risk results are effectively communicated by healthcare workers to those at-risk couples and their families. These are also important within the context of culture and health literacy because health beliefs and attitudes of the general public have a significant impact on health seeking behaviors that substantially influence reproductive decisions made by individuals and families.
Prenatal screening and testing technologies using genetic methods are rapidly expanding, offering increasing amounts of genetic information about the fetus. However, research shows that women from underserved populations are less likely to receive or accept prenatal genetic services, leading to discordant birth outcomes. We propose to explore the barriers to access and acceptance of prenatal genetic care among women from underserved populations.
This project is designed to improve our understanding of when to best communicate parental genetic risk information to minor children by assessing the minor?s readiness to receive such information from the perspective of the parent and the minor child themselves. We will interview parent-child pairs who have already communicated about parental genetic risk information to richly characterize experiences with, perspectives on, and implications of the communication event(s).
PROJECT NARRATIVE A number of US employers are offering their employees confidential workplace genomic testing (wGT), a service that could inform employees of their genetic risk for certain treatable diseases but may also raise concerns about genetic privacy and workplace discrimination.