Abstract
Problem:
Access to genetic testing and counseling saves lives. Results can direct individuals who are pregnant or planning to become pregnant, and children and their families to prevention, monitoring, and treatment options - reducing risk and increasing the chance for successful outcomes for people with genetic conditions. However, data demonstrates that low-income and Black, Indigenous, and People of Color (BIPOC) communities in the Pacific Northwest lack access to life-saving genetic services. We do not know of any services in the Pacific Northwest currently offering no cost independent genetic counseling to patients with a focus on reaching marginalized communities. GSF seeks to change this. And as the only genetic counseling nonprofit, our team of experienced board-certified genetic counselors provide services without bias from commercial entities that profit from genetic test sales.
Goals and objectives:
GSF's long-term goal is to decrease institutional and societal barriers to independent genetic counseling. In response to the needs identified for equitable, accessible genetic services in Alaska, Idaho, Washington, and Oregon communities, GSF will implement a new no-cost model of genetic counseling through telehealth genetic services for low-income and BIPOC communities across the Pacific Northwest. Through this project our objectives are to 1) Expand delivery of no-cost services by serving more individuals through direct and timely access to genetic counseling, 2) Increase the amount of no-cost genetic counseling provided to low-income and BIPOC individuals, 3) Partner with Federally Qualified Health Centers/Community Health Centers (FQHCs/CHCs) to ensure we are reaching the most underserved populations. In addition to providing direct genetic counseling services, GSF will also deliver a continuing education and outreach campaign to healthcare providers and support staff who work at FQHC/CHCs that provide family planning services, prenatal care, and pediatric care. Providing primary care providers with best practices and information around genetic conditions, testing, and counseling will enable them to better support the growing needs of their patients as genetic information becomes increasingly important to patient care.
Methodology:
GSF will increase access to genetic counseling through 1) Outreach and engagement with community members and FQHC/CHCs; 2) Formation of an advisory board to provide project oversight and direction; 3) Provide no-cost genetic counseling services to patients at families at FQHC/CHCs in Alaska, Idaho, Washington, and Oregon, 4) Form and provide ongoing support of a genetic information call center; 5) Outreach and education for providers and staff at FQHC/CHCs that provide pediatric, prenatal, preconception care, 6) Disseminate resources and decision support tools to providers, staff, and patients at FQHC/CHCs, 7) Provide regular professional development and training opportunities to our genetic counselors, and 8) Throughout the project, collect and evaluate date to inform of the success of the program and identify unmet needs.COORDINATION: GSF will collaborate with FQHC/CHC partner sites in Alaska, Idaho, Washington, and Oregon. This project will also establish an advisory board that includes stakeholders from each of the states that will include clinicians, patient and family organizations, and community organizations to provide oversight and direction of this project.
Evaluation:
GSF will evaluate the number of patients served, number of hours of counseling provided, number of community partners trained/educated/engaged, and number of educational materials distributed. Formal patient follow-up surveys will collect patient feedback, and conversations with health and community partners will provide qualitative feedback.