PROJECT NARRATIVE The purpose of this R25 Diversity Action Plan grant proposal is to create a program that will equip students with disabilities with mentoring, research, and curricular resources that facilitate their advancement towards becoming members of the ELSI community of scholars.
The incorporation of genetics and genomics into medical care and the public domain raises new challenges for how we understand privacy and identity, concepts that have long been closely linked in American discourse.
PROJECT NARRATIVE The goal of the proposed research is to investigate how clinical genomic sequencing impacts families of pediatric patients. This research will develop an empirically informed framework of normative values important to families of pediatric patients, including ethical, legal, and social implications (ELSI), which will then be used to elicit preferences for features of sequencing from a nationally representative sample of parents in the US.
PROJECT NARRATIVE Investigative genetic genealogy, a technique used by law enforcement to generate leads in criminal cases through searches of genetic genealogy databases, raises important privacy concerns for database participants and their families. This project will measure public preferences related to law enforcement participation in genetic genealogy databases and develop best practices for investigative genetic genealogy that operationalize these preferences by engaging experts and relevant constituencies.
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: 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.
Project Narrative ?Ethical and Social Implications of In Vitro Gametogenesis? In vitro gametogenesis (IVG) is an emerging technology that involves making an egg or a sperm cell outside of the body from a skin cell or a progenitor germ cell, an approach recently validated in mouse models.
PROJECT NARRATIVE At least 15% of children with cancer have an underlying genetic cause of their cancer, requiring significant counseling regarding therapy modifications, cancer surveillance, and lifestyle changes for both the patient and their family. There is a shortage of qualified genetic counselors available to meet with these families, especially in the stressful setting of cancer diagnosis.