Family decision maker perspectives on the return of genetic results in biobanking research.

PURPOSE: There are many ethical considerations regarding the return of genetic results to biobanking participants, especially when biobanks collect samples from deceased organ and tissue donors that require the authorization of a family decision maker (FDM). This article explores FDM knowledge and opinions regarding return of genetic results in the context of the Genotype-Tissue Expression (GTEx) Project, which does not return results to participants. METHODS: Data collection included a survey completed by Organ Procurement Organization requesters (n = 22) and semistructured telephone interviews with FDM (n = 55). RESULTS: Nearly every FDM wanted some form of genetic results returned. Information regarding treatable diseases (94.3%) and diseases that could affect their children (84.9%) were more desirable than that regarding untreatable diseases (71.7%). Sixty percent of FDMs understood that GTEx would not return genetic results. FDMs were four times more likely to have correct knowledge of the GTEx policy when their GTEx requester reported discussing the topic with them. CONCLUSION: FDMs from the GTEx project were interested in receiving genetic test results. Marked changes in the infrastructure of the GTEx would be required to alter the policy. Regardless, care must be taken to ensure that the return policy is clearly communicated with FDMs to dispel misconceptions.Genet Med 18 1, 82-88.

DEFINING THE "COMMUNITY" FOR A COMMUNITY-BASED PUBLIC HEALTH INTERVENTION ADDRESSING LATINO IMMIGRANT HEALTH DISPARITIES: AN APPLICATION OF ETHNOGRAPHIC METHODS.

Although Latino and other immigrant populations are the driving force behind population increases in the U.S., there are significant gaps in knowledge and practice on addressing health disparities in these populations. The Avance Center for the Advancement of Immigrant/Refugee Health, a health disparities research center in the Washington, DC area, includes as part of its mission a multi-level, participatory community intervention (called Adelante) to address the co-occurrence of substance abuse, violence and sex risk among Latino immigrant youth and young adults. Research staff and community partners knew that the intervention community had grown beyond its Census-designated place (CDP) boundaries, and that connection and attachment to community were relevant to an intervention. Thus, in order to understand current geographic and social boundaries of the community for sampling, data collection, intervention design and implementation, the research team conducted an ethnographic study to identify self-defined community boundaries, both geographic and social. Beginning with preliminary data from a pilot intervention and the original CDP map, the research included: geo-mapping de-identified addresses of service clients from a major community organization; key informant interviews; and observation and intercept interviews in the community. The results provided an expanded community boundary profile and important information about community identity.

Multisite exploration of clinical decision making for antibiotic use by emergency medicine providers using quantitative and qualitative methods.

OBJECTIVES: To explore current practices and decision making regarding antimicrobial prescribing among emergency department (ED) clinical providers. METHODS: We conducted a survey of ED providers recruited from 8 sites in 3 cities. Using purposeful sampling, we then recruited 21 providers for in-depth interviews. Additionally, we observed 10 patient-provider interactions at one of the ED sites. SAS 9.3 was used for descriptive and predictive statistics. Interviews were audio recorded, transcribed, and analyzed using a thematic, constructivist approach with consensus coding using NVivo 10.0. Field and interview notes collected during the observational study were aligned with themes identified through individual interviews. RESULTS: Of 150 survey respondents, 76% agreed or strongly agreed that antibiotics are overused in the ED, while half believed they personally did not overprescribe. Eighty-nine percent used a smartphone or tablet in the ED for antibiotic prescribing decisions. Several significant differences were found between attending and resident physicians. Interview analysis identified 42 codes aggregated into the following themes: (1) resource and environmental factors that affect care; (2) access to and quality of care received outside of the ED consult; (3) patient-provider relationships; (4) clinical inertia; and (5) local knowledge generation. The observational study revealed limited patient understanding of antibiotic use. Providers relied heavily upon diagnostics and provided limited education to patients. Most patients denied a priori expectations of being prescribed antibiotics. CONCLUSIONS: Patient, provider, and healthcare system factors should be considered when designing interventions to improve antimicrobial stewardship in the ED setting.