scholarly journals Exploring the Inclusion of Under-Served Groups in Trials Methodology Research: An Example from Ethnic Minority Populations’ Views on Deferred Consent

2021 ◽  
Author(s):  
Timia Raven-Gregg ◽  
Victoria Shepherd
Keyword(s):  
Clinical Trials ◽  
Ethnic Minority ◽  
Ethnic Minorities ◽  
Research Process ◽  
Minority Populations ◽  
Specific Patient ◽  
Recruitment Methods ◽  
Deferred Consent ◽  
Ethnic Minority Populations ◽  
Trials Methodology

Abstract Background: Deferred consent is used to recruit patients in emergency research, when informed consent cannot be obtained prior to enrolment. This model of consent allows studies to recruit larger numbers of participants, especially where a surrogate-decision maker may be unavailable to provide consent. Whilst deferred consent offers the potential to promote trial diversity by including under-served groups, it is ethically complex and views about its use amongst these populations requires further exploration. The aim of this article is to build upon recent initiatives to improve inclusivity in trials, such as the NIHR INCLUDE project, and consider whether trials methodology research is inclusive, focusing on ethnic minority populations’ attitudes towards the use of deferred consent.Main text: Findings from the literature suggest that research regarding attitudes toward recruitment methods like deferred consent largely fail to adequately represent ethnic minorities. Many studies fail to report the composition of patient samples or conduct analyses on any differences between specific patient groups. In those that do, the categorisation of ethnic groups is ambiguous. Frequently diversely different groups are considered as more homogenous than they are. Whilst deferred consent is deemed generally acceptable, analysis of patient sub-groups shows that this attitude is not universal. Those from racial and ethnic minority backgrounds reported higher levels of unacceptability, which was impacted by previous first or second-hand experience of its use and historical mistrust in research. However, whilst deferred consent was found to increase the numbers of black participants enrolled in some trials, their over-enrolment in other trials may raise further concerns. Conclusions: Inclusivity in clinical trials is important, as highlighted by the COVID-19 pandemic. To improve this, we must ensure that methodological studies such as those exploring attitudes to research are inclusive. More effort is needed to understand the views of under-served groups, such as ethnic minorities, toward research in order to improve participation in clinical trials. Our findings echo those from the INCLUDE project, in that better reporting is needed and increasing the confidence of ethnic minority groups in research requires improving representation throughout the research process. This will involve diversifying research teams and ethics committees.

scholarly journals Exploring the inclusion of under-served groups in trials methodology research: an example from ethnic minority populations’ views on deferred consent

Trials ◽  
2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Timia Raven-Gregg ◽  
Victoria Shepherd
Keyword(s):  
Clinical Trials ◽  
Ethnic Minority ◽  
Ethnic Minorities ◽  
Research Process ◽  
Minority Populations ◽  
Specific Patient ◽  
Recruitment Methods ◽  
Deferred Consent ◽  
Ethnic Minority Populations ◽  
Trials Methodology

Abstract Background Deferred consent is used to recruit patients in emergency research, when informed consent cannot be obtained prior to enrolment. This model of consent allows studies to recruit larger numbers of participants, especially where a surrogate-decision maker may be unavailable to provide consent. Whilst deferred consent offers the potential to promote trial diversity by including under-served groups, it is ethically complex and views about its use amongst these populations require further exploration. The aim of this article is to build upon recent initiatives to improve inclusivity in trials, such as the NIHR INCLUDE project, and consider whether trials methodology research is inclusive, focusing on ethnic minority populations’ attitudes towards the use of deferred consent. Main text Findings from the literature suggest that research regarding attitudes toward recruitment methods like deferred consent largely fail to adequately represent ethnic minorities. Many studies fail to report the composition of patient samples or conduct analyses on any differences between specific patient groups. In those that do, the categorisation of ethnic groups is ambiguous. Frequently diversely different groups are considered as more homogenous than they are. Whilst deferred consent is deemed generally acceptable, analysis of patient sub-groups shows that this attitude is not universal. Those from racial and ethnic minority backgrounds reported higher levels of unacceptability, which was impacted by previous first or second-hand experience of its use and historical mistrust in research. However, whilst deferred consent was found to increase the numbers of black participants enrolled in some trials, their over-enrolment in other trials may raise further concerns. Conclusions Inclusivity in clinical trials is important, as highlighted by the COVID-19 pandemic. To improve this, we must ensure that methodological studies such as those exploring attitudes to research are inclusive. More effort is needed to understand the views of under-served groups, such as ethnic minorities, toward research in order to improve participation in clinical trials. Our findings echo those from the INCLUDE project, in that better reporting is needed and increasing the confidence of ethnic minority groups in research requires improving representation throughout the research process. This will involve diversifying research teams and ethics committees.

Utilization of Complementary and Alternative Medicine Among Racial and Ethnic Minority Populations: Implications for Reducing Health Disparities

2004 ◽  
Vol 22 (1) ◽  
pp. 285-313 ◽  
Author(s):  
ROXANNE STRUTHERS ◽  
LEE ANNE NICHOLS
Keyword(s):  
Health Disparities ◽  
Alternative Medicine ◽  
Complementary And Alternative Medicine ◽  
Ethnic Minority ◽  
Ethnic Minorities ◽  
Minority Populations ◽  
Racial And Ethnic Minorities ◽  
Ethnic Minority Populations ◽  
Racial And Ethnic Minority ◽  
Complementary And Alternative

This chapter provides a review of research literature and describes the use of complementary and alternative medicine (CAM) among racial and ethnic minority populations. The relevance of CAM to health disparities is also discussed. Complementary and alternative medicines are terms used to describe methods of health care beyond the usual Western biomedical model. These treatments are prevalent and increasing in the United States. Many CAM therapies are ancient therapies among certain racial and ethnic minorities. Thus, it seems that complementary and alternative medicine is being used and/or could be used to decrease health disparities among these populations. A review of 26 research articles shows that we are at the beginning stages of examining this phenomenon and that CAM use by any population is only now being described. Of the reviewed studies, 19 studies documented use of CAM among racial and ethnic minorities; 7 revealed that CAM is not used more among ethnic groups than among White (non-Hispanic) populations. Although it is known that racial and ethnic people utilize CAM, the vast array of research questions and aims, CAM definitions, CAM practitioners, and diverse research methodologies result in mixed research findings and conclusions. In some instances, utilization of CAM modalities is stated to be a result of culture among particular groups. Even so, there is currently no evidence that scientifically supports the notion that CAM can be used to reduce health disparities within racial and ethnic minority populations.

scholarly journals A New Insight for the Identification of Oncogenic Variants in Breast and Prostate Cancers in Diverse Human Populations, With a Focus on Latinos

2021 ◽  
Vol 12 ◽  
Author(s):  
Nelson M. Varela ◽  
Patricia Guevara-Ramírez ◽  
Cristian Acevedo ◽  
Tomás Zambrano ◽  
Isaac Armendáriz-Castillo ◽  
...  
Keyword(s):  
Clinical Trials ◽  
Ethnic Minority ◽  
Latin American ◽  
Current Status ◽  
Minority Populations ◽  
Human Populations ◽  
Precision Oncology ◽  
Driver Genes ◽  
Ethnic Minority Populations ◽  
Racial Ethnic

Background: Breast cancer (BRCA) and prostate cancer (PRCA) are the most commonly diagnosed cancer types in Latin American women and men, respectively. Although in recent years large-scale efforts from international consortia have focused on improving precision oncology, a better understanding of genomic features of BRCA and PRCA in developing regions and racial/ethnic minority populations is still required.Methods: To fill in this gap, we performed integrated in silico analyses to elucidate oncogenic variants from BRCA and PRCA driver genes; to calculate their deleteriousness scores and allele frequencies from seven human populations worldwide, including Latinos; and to propose the most effective therapeutic strategies based on precision oncology.Results: We analyzed 339,100 variants belonging to 99 BRCA and 82 PRCA driver genes and identified 18,512 and 15,648 known/predicted oncogenic variants, respectively. Regarding known oncogenic variants, we prioritized the most frequent and deleterious variants of BRCA (n = 230) and PRCA (n = 167) from Latino, African, Ashkenazi Jewish, East Asian, South Asian, European Finnish, and European non-Finnish populations, to incorporate them into pharmacogenomics testing. Lastly, we identified which oncogenic variants may shape the response to anti-cancer therapies, detailing the current status of pharmacogenomics guidelines and clinical trials involved in BRCA and PRCA cancer driver proteins.Conclusion: It is imperative to unify efforts where developing countries might invest in obtaining databases of genomic profiles of their populations, and developed countries might incorporate racial/ethnic minority populations in future clinical trials and cancer researches with the overall objective of fomenting pharmacogenomics in clinical practice and public health policies.

scholarly journals Genetic Risk Factors for Alzheimer's Disease in Racial/Ethnic Minority Populations in the U.S.: A Scoping Review

2021 ◽  
Vol 9 ◽  
Author(s):  
Lindsey Rubin ◽  
Lucy A. Ingram ◽  
Nicholas V. Resciniti ◽  
Brianna Ashford-Carroll ◽  
Katherine Henrietta Leith ◽  
...  
Keyword(s):  
Risk Factors ◽  
Ethnic Minority ◽  
Ethnic Minorities ◽  
Scoping Review ◽  
Genetic Risk ◽  
Genetic Risk Factors ◽  
Minority Populations ◽  
Ethnic Minority Populations ◽  
Racial Ethnic ◽  
The U.S

Objectives: As the United States (U.S.) population rapidly ages, the incidence of Alzheimer's Disease and Related Dementias (ADRDs) is rising, with racial/ethnic minorities affected at disproportionate rates. Much research has been undertaken to test, sequence, and analyze genetic risk factors for ADRDs in Caucasian populations, but comparatively little has been done with racial/ethnic minority populations. We conducted a scoping review to examine the nature and extent of the research that has been published about the genetic factors of ADRDs among racial/ethnic minorities in the U.S.Design: Using an established scoping review methodological framework, we searched electronic databases for articles describing peer-reviewed empirical studies or Genome-Wide Association Studies that had been published 2005–2018 and focused on ADRD-related genes or genetic factors among underrepresented racial/ethnic minority population in the U.S.Results: Sixty-six articles met the inclusion criteria for full text review. Well-established ADRD genetic risk factors for Caucasian populations including APOE, APP, PSEN1, and PSEN2 have not been studied to the same degree in minority U.S. populations. Compared to the amount of research that has been conducted with Caucasian populations in the U.S., racial/ethnic minority communities are underrepresented.Conclusion: Given the projected growth of the aging population and incidence of ADRDs, particularly among racial/ethnic minorities, increased focus on this important segment of the population is warranted. Our review can aid researchers in developing fundamental research questions to determine the role that ADRD risk genes play in the heavier burden of ADRDs in racial/ethnic minority populations.

scholarly journals Community-centred interventions for improving public mental health among adults from ethnic minority populations in the UK: a scoping review

BMJ Open ◽  
2021 ◽  
Vol 11 (4) ◽  
pp. e041102
Author(s):  
Cleo Baskin ◽  
Geiske Zijlstra ◽  
Mike McGrath ◽  
Caroline Lee ◽  
Fiona Helen Duncan ◽  
...  
Keyword(s):  
Mental Health ◽  
Ethnic Minority ◽  
Minority Groups ◽  
Public Mental Health ◽  
Risk Of Bias ◽  
Minority Populations ◽  
Ethnic Minority Groups ◽  
Ethnic Minority Populations ◽  
The Uk ◽  
Intervention Description

ObjectivesUndertake a scoping review to determine the effectiveness of community-centred interventions designed to improve the mental health and well-being of adults from ethnic minority groups in the UK.MethodsWe searched six electronic academic databases for studies published between January 1990 and September 2019: Medline, Embase, PsychINFO, Scopus, CINAHL and Cochrane. For intervention description and data extraction we used the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews checklist and Template for Intervention Description and Replication guide. Quality was assessed using Cochrane risk of bias tools. Grey literature results were deemed beyond the scope of this review due to the large number of interventions and lack of available outcomes data.ResultsOf 4501 studies, 7 met the eligibility criteria of UK-based community interventions targeting mental health in adults from ethnic minority populations: four randomised controlled trials, one pre/post-pilot study, one cross-sectional study and one ethnographic study. Interventions included therapy-style sessions, peer-support groups, educational materials, gym access and a family services programme. Common components included a focus on tackling social isolation, using lay health workers from within the community, signposting and overcoming structural barriers to access. Four studies reported a statistically significant positive effect on mental health outcomes and six were appraised as having a high risk of bias. Study populations were ethnically heterogeneous and targeted people mainly from South Asia. No studies examined interventions targeting men.ConclusionsThere is a paucity of high-quality evidence regarding community-centred interventions focused on improving public mental health among ethnic minority groups. Decision makers need scientific evidence to inform effective approaches to mitigating health disparities. Our next steps are to map promising community activities and interventions that are currently being provided to help identify emerging evidence.

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