Returning genomic results in a Federally Qualified Health Center: the intersection of precision medicine and social determinants of health

Abstract

Purpose: This report describes the return of sequencing results to low-income Latino participants recruited through a Federally Qualified Health Center (FQHC). We describe challenges in returning research results secondary to social determinants of health and present lessons learned to guide future genomic medicine implementation studies in low resource settings. Methods: 500 Latino adults (76% women) consented to research sequencing for a predetermined panel of actionable genes. Providers and staff from the FQHC were engaged to align processes with the practice and a Community Advisory Board grounded the project in the local community. Results: A pathogenic/likely pathogenic variant was present in 10 participants (2%). Challenges in return of results included the time lag (582±53 days) between enrollment and returning actionable results, difficulty reaching participants, missed appointments, low health literacy, lack of health insurance, and reconciling results with limited information on family history. Return of one actionable result was deferred due to acute emotional distress secondary to recent traumatic life events. Conclusion: The social determinants of health influence the implementation of genomic medicine in low-income populations in low-resource settings. Considering non-biological factors that contribute to disparities will be necessary to better appreciate how genomic medicine may fit within the context of health equity.

Disclosure of clinically actionable genetic variants to thoracic aortic dissection biobank participants

“…Participants reported low test-related distress and minimal regret about their decision to learn their research genetic result, which is consistent with the established literature on the psychological impact of receiving genetic test results [ 24 ]. The study team did not include information about the gene or genetic variant in the recontact letter to preserve the participant’s right to choose whether they wanted to learn their genetic result, which is consistent with the approach of other groups [ 24 – 27 ]. However, the ambiguity of a letter with no gene described may lead to higher initial levels of anxiety for a small subset of participants.…”

Integrating Genomic Screening into Primary Care: Provider Experiences Caring for Latino Patients at a Community-Based Health Center

“…Of these individuals, ten were found to have a P/LP result. 17 Table 1 highlights the diversity of clinical management scenarios associated with reporting medically actionable genomic screening results and provides a summary of select patient health histories, genomic results, clinical management options, and recommended follow-up care. These cases illustrate the types of care-coordination challenges that PCPs may encounter when genomic screening is offered at a community-based health care center like MPHC.…”

Implementing genomic screening in diverse populations

“…Four out of 78 participants eligible to receive results were unable to be reached, suggesting barriers to re-establishing contact with some participants in order to disclose genomic results. To ensure adequate representation of hard-to-reach populations in genomic research, efforts to facilitate recontact are needed, such as ensuring multiple and preferred modes of communication, and maintaining contact and engagement with participants over time (42). The benefits of returning genomic research results, particularly in diverse populations and healthcare settings, is not well understood.…”