Genetic Testing in the Era of New Treatments for Alzheimer’s Disease

ELSI • GC Exchange, hosted by The Jackson Laboratory for Genomic Medicine, is an educational series designed for genetic counselors. This series provides a unique opportunity to earn Category 1 Continuing Education Units (CEUs) while exploring various Ethical, Legal, and Social Issues (ELSI) pertinent to genetic counseling.

In this talk, attendees learned to identify ethical, legal, and social issues posed by genetic testing for Alzheimer's disease (AD) and describe how APOE testing can be used to inform treatment decision making for AD.

Perceived Caregiving Interactions and Behaviors: Malfeasance, Nonfeasance, and Uplift Scales

The Perceived Caregiving Interactions and Behaviors: Malfeasance, Nonfeasance, Uplift Scales are used to examine whether levels of nonfeasance, malfeasance, and uplift are associated with the perception that a member of a familial caregiving network is under-contributing. The scales include 19 questions about caregiving interactions and behaviors. Participants name each person in their familial caregiving network and indicate which members are engaged in the specified caregiving interactions and behaviors.

Feasibility of an Innovative Method to Understand the Dynamics of Choice and Create Diversity in Genomics Research among Older African Americans

PROJECT NARRATIVE In response to the continued underrepresentation of African Americans in aging research involving genetic material, this study seeks to test the feasibility of an innovative method to explore the interaction of multiple factors that influence the decision to participate in research that can be applied to representative samples of, typically underrepresented, participants. Through a gamified, card sort adaptation of a factorial survey design, we will examine a range of study ?attributes?

Ethical Guidance for Family Studies in Human Genetics

This project will develop ethical guidance for presymptomatic testing for autosomal dominant, late onset diseases for which genetic probes are available (familial Alzheimer disease, amyotrophic lateral sclerosis, Huntington disease, myotonic dystrophy, neurofibromatosis, adult polycystic kidney disease and retinitis pigmentosa). Our six-member working group offers expertise in genetic counseling, clinical medical ethics, genetic research, law, ethics and communication.