The Sangre Por Salud Biobank: Facilitating Genetic Research in an Underrepresented Latino Community

Abstract

Background/Aims: The Sangre Por Salud (Blood for Health; SPS) Biobank was created for the purpose of expanding precision medicine research to include underrepresented Latino patients. It is the result of a unique collaboration between Mayo Clinic and Mountain Park Health Center, a federally qualified community health center in Phoenix, Arizona. This report describes the rationale, development, implementation, and characteristics of the SPS Biobank. Methods: Latino adults (ages 18-85 years) who were active patients within Mountain Park Health Center's internal medicine practice in Phoenix, Ariz., and had no history of diabetes were eligible. Participants provided a personal and family history of chronic disease, completed a sociodemographic, psychosocial, and behavioral questionnaire, underwent a comprehensive cardiometabolic risk assessment (anthropometrics, blood pressure and labs), and provided blood samples for banking. Laboratory results of cardiometabolic testing were returned to the participants and their providers through the electronic health record. Results: During the first 2 years of recruitment into theSPS Biobank, 2,335 patients were approached and 1,432 (61.3%) consented to participate; 1,354 (94.5%) ultimately completed all requisite questionnaires and medical evaluations. The cohort is primarily Spanish-speaking (72.9%), female (73.3%), with a mean age of 41.3 ± 12.5 years. Most participants were born outside of the US (77.9%) and do not have health insurance (77.5%). The prevalence of overweight (35.5%) and obesity (45.0%) was high, as was previously unidentified prediabetes (55.9%), type 2 diabetes (7.4%), prehypertension (46.8%), and hypertension (16.2%). The majority of participants rated their health as good to excellent (72.1%) and, as a whole, described their overall quality of life as high (7.9/10). Conclusion: Collaborative efforts such as the SPS Biobank are critical for ensuring that underrepresented minority populations are included in precision medicine initiatives and biomedical research that seeks to improve human health and reduce the burdens of disease.

Characteristics and utilisation of the Mayo Clinic Biobank, a clinic-based prospective collection in the USA: cohort profile

“…In addition to their role in Biobank stewardship, the CABs provide researchers with important resources to gain understanding of local attitudes relevant to their specific research projects, for example, in their consideration of a proposal to place research results into the EHR to facilitate translation of the results from a pharmacogenomics study 23. A unique collaboration between the Mayo Clinic and Mountain Park Health Center Biobanks and CABs has also helped to raise and address questions about under-representation of Latino patients in precision medicine research 24 25…”

“…This is due in part to under-representation of the same racial groups among patients at Mayo Clinic. To address this disparity, Mayo Clinic is developing two sister biobanks: The Sangre Por Salud Biobank24 among Hispanic populations in Phoenix, Arizona, and Biobank Mississippi at the University of Mississippi Medical Center which is enriched for persons of African descent. Another limitation of the Mayo Clinic Biobank is tied to the original intent of the Biobank, which was to provide a source of controls for primarily DNA-based, case–control studies.…”

Responsiveness and adaptability in community engaged biobanking research: experiences from a Hispanic community

“…The underlying social and biological causes of these associations may be more fully understood when the sample of donors accurately reflects the demography of the population, and between-and within-group differences may be more closely examined. Yet, Hispanics and other ethnic minority groups have donated tissues for research purposes at much lower rates than Whites (Shaibi et al 2016). Increasing ethnic minorities' participation in biobanking efforts is now recognized as essential to ensuring a diverse donor pool and medical discoveries that will benefit all groups (Christensen et al 2010;Lemke et al 2010a;Streicher et al 2011).…”

“…Thus, realizing the full population impact of biobanking is highly dependent on public trust and participation (Etchegary et al 2013;Lemke et al 2010b). Ensuring participation from the entirety of the US population so that all benefit from new genomic technologies will require engaging communities in ways that create awareness, garner trust, and inform the science of the needs and preferences of individuals from culturally diverse populations (Shaibi et al 2016).…”

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

“…4 The Arizona RAVE study enrolled Latino participants through the Sangre Por Salud (SPS) Biobank, a collaboration between Mayo Clinic and MPHC that is governed by both institutions and designed to facilitate research with an under-represented population. 5 As part of the SPS Biobank, MPHC patients agreed to share data, biospecimens, and contact information with Mayo Clinic in order to support genomic medicine research studies. The SPS biobank was developed using principles of community-based participatory research 6 and is guided by a Community Advisory Board (CAB) comprised of MPHC patients and community members.…”