We examined the experiences, perceptions, and values that are brought to bear when individuals from different ethnic and cultural backgrounds consider participating in health research. Fifty-three women from Latino, Asian American, Middle Eastern, or Non-Latino, White backgrounds participated in seven English or Spanish focus groups facilitated by trained investigators using a standard protocol. Investigators described the National Children’s Study (NCS) and then asked questions to elicit potential concerns, expectations, and informational needs. Group sessions were audio-recorded, transcribed verbatim, and analyzed using qualitative thematic methods. A major theme that emerged during focus groups was participant self-identification as a member of a cultural group or community when raising issues that would influence their decision to participate in research. A related theme was the belief by some that communities may differ in the ease of participation in the NCS. Identified themes related to the informed consent process included perceived risks, anticipated burden, perceived benefits, informational needs, and decision-making strategies. Although themes were shared across groups, there were cultural differences within themes. Findings indicated that individuals from diverse backgrounds may have different perspectives on and expectations for the research process. To effectively recruit representative samples, it will be important to address a range of issues relevant for informed consent and to consider the impact of participation on both individuals and communities.
The objectives of this study were to study maternal preferences for the return of their child’s genetic results and to describe the experiences, perceptions, attitudes and values that are brought to bear when individuals from different racial and cultural backgrounds consider participating in genetic research. We recruited women with diverse sociodemographic profiles to participate in seven focus groups. Twenty-eight percent of participants self-identified as Hispanic; 49% as White, Non-Hispanic; and 21% as Asian or Asian American. Focus groups were conducted in English or Spanish and were audio-recorded and transcribed verbatim. Transcripts were analyzed using qualitative thematic methods. Results indicated that preferences and decisions regarding the return of results may depend on both research and individual contextual factors. Participants understood the return of results as a complex issue, where individual and cultural differences in preferences are certain to arise. Another key finding was that participants desired an interpersonal, dynamic, flexible process that accommodated individual preferences and contextual differences for returning results. Our findings indicate a need to have well-developed systems for allowing participants to make and change over time their choices regarding the return of their child’s genetic results.
Social media platforms are effective tools used to help communicate and increase involvement in cultural, political, and scientific circles. In 2012, an ad hoc committee was established to explore online fisheries science communication and how social media platforms can be utilized by the American Fisheries Society (AFS). A survey was disseminated to all AFS units (chapters, sections, divisions) and student subunits to better understand the current use of social media within the AFS. A relatively high response rate (82%) provided some confidence in the survey results—namely, that nearly 69% or more of units and subunits used social media. Facebook was the dominant platform used (59%; all others < 15%) and almost exclusively (97%) for the purpose of communication. Education, outreach, and member recruitment were other reasons for social media use. Finally, whether units currently use social media or not at all, it was recommended that AFS‐led workshops and assistance would increase the usefulness of social media.
OBJECTIVE Recent studies highlight racial disparities in insulin pump (PUMP) and continuous glucose monitor (CGM) use in children and adolescents with type 1 diabetes (T1D). This study explored racial disparities in diabetes technology among adult patients with T1D. RESEARCH DESIGN AND METHODS This was a retrospective clinic-based cohort study of adult patients with T1D seen consecutively from April 2013 to January 2020. Race was categorized into non-Black (reference group) and Black. The primary outcomes were baseline and prevalent technology use, rates of diabetes technology discussions (CGMdiscn, PUMPdiscn), and prescribing (CGMrx, PUMPrx). Multivariable logistic regression analysis evaluated the association of technology discussions and prescribing with race, adjusting for social determinants of health and diabetes outcomes. RESULTS Among 1,528 adults with T1D, baseline technology use was significantly lower for Black compared with non-Black patients (7.9% vs. 30.3% for CGM; 18.7% vs. 49.6% for PUMP), as was prevalent use (43.6% vs. 72.1% for CGM; 30.7% vs. 64.2% for PUMP). Black patients had adjusted odds ratios (aORs) of 0.51 (95% CI 0.29, 0.90) for CGMdiscn and 0.61 (95% CI 0.41, 0.93) for CGMrx. Black patients had aORs of 0.74 (95% CI 0.44, 1.25) for PUMPdiscn and 0.40 (95% CI, 0.22, 0.70) for PUMPrx. Neighborhood context, insurance, marital and employment status, and number of clinic visits were also associated with the outcomes. CONCLUSIONS Significant racial disparities were observed in discussions, prescribing, and use of diabetes technology. Further research is needed to identify the causes behind these disparities and develop and evaluate strategies to reduce them.
For many fishes, reproducing early in the year may present tradeoffs for the offspring: the drawbacks associated with harsh environmental conditions may be offset by advantages in competition for food and space. We investigated this tradeoff in a system where hatchery-origin steelhead Oncorhynchus mykiss were bred to spawn about 4 months earlier than wild-origin fish. Hatchery-origin adults were released into the wild and spawned in common with wild steelhead. Naturally spawned offspring from these matings were assigned to hatchery, wild, and hybrid lineages by using a panel of 96 single-nucleotide polymorphisms. We then evaluated whether fry abundance, body size and condition, and geographic distribution differed based on parental lineage. The observed mixture proportions were 0.007 hatchery-lineage, 0.289 hybrid, and 0.704 wild-lineage juveniles, despite the predominance of hatchery-origin parents. There were significant differences in FL (hatchery > hybrid > wild) but no difference in body condition. We modeled the emergence dates of the sampled fry and estimated that 96.0% of wild-lineage fish emerged after the arrival of temperate spring conditions (reduced flows and warmer temperatures) compared with 80.4% of hybrids and 41.2% of hatchery-lineage fish. We hypothesize that the low abundance of pure hatchery-lineage fry may be due to a mismatch between the timing of breeding by the parents and suitable river conditions, resulting in low survival and physical displacement of hatchery-lineage fry from the system. Thus, the advantages of early emergence and large size associated with hatchery origin did not mitigate the disadvantages of early spawning in this case.
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