scholarly journals Barriers to African American and Other Minority Population Participation in Genomic-Related Health Research: A Systematic Literature Review

2021 ◽  
Author(s):  
Karyn Onyeneho ◽  
Linda Thompson ◽  
Priscilla Okunji ◽  
Thomas Fungwe ◽  
Gina Brown

<p><a>The paucity of data for African Americans (AAs) participating in health-related research (e.g., genomic health research) is often attributed to difficulty in recruitment and retention. The COVID-19 pandemic, which has resulted in hundreds of thousands of deaths, particularly in AA communities, has amplified the problem. Reasons for not participating remain unclear and may account for health disparities observed in these communities. Failure and unwillingness to participate in research in general influences health disparities, which may lead to missed economic opportunities, inequalities, poor health, reduced quality of life, and premature death.</a> This review assesses barriers to acceptance of genomic-related health research among AAs and other marginalized populations. To investigate barriers to participating in health-related research involving deoxyribonucleic acid (DNA), 38 studies published in PubMed and Scopus between January 2008 and December 2018 were reviewed. Results were based on feedback collected by trained research assistants and phlebotomists during structured group, face-to-face, and telephonic<b>. </b>Reason for non-participation in genomic related research were pervasive and included perceived and/or actual experiences of mistrust and deceptiveness by investigators, misuse of genomic data, unethical research practices, healthcare system distrust, privacy concerns, socioeconomic influences, cultural beliefs, and other influences associated with psychosocial factors.<b> </b>These results are consistent with diminishing participation of AAs in DNA-related research attributable to a range of factors leading to health disparities. Addressing these factors among marginalized communities, and AAs who have not largely been represented in DNA-related research, will guide insights on how to conduct research in these communities.<b></b></p>

2021 ◽  
Author(s):  
Karyn Onyeneho ◽  
Linda Thompson ◽  
Priscilla Okunji ◽  
Thomas Fungwe ◽  
Gina Brown

<p><a>The paucity of data for African Americans (AAs) participating in health-related research (e.g., genomic health research) is often attributed to difficulty in recruitment and retention. The COVID-19 pandemic, which has resulted in hundreds of thousands of deaths, particularly in AA communities, has amplified the problem. Reasons for not participating remain unclear and may account for health disparities observed in these communities. Failure and unwillingness to participate in research in general influences health disparities, which may lead to missed economic opportunities, inequalities, poor health, reduced quality of life, and premature death.</a> This review assesses barriers to acceptance of genomic-related health research among AAs and other marginalized populations. To investigate barriers to participating in health-related research involving deoxyribonucleic acid (DNA), 38 studies published in PubMed and Scopus between January 2008 and December 2018 were reviewed. Results were based on feedback collected by trained research assistants and phlebotomists during structured group, face-to-face, and telephonic<b>. </b>Reason for non-participation in genomic related research were pervasive and included perceived and/or actual experiences of mistrust and deceptiveness by investigators, misuse of genomic data, unethical research practices, healthcare system distrust, privacy concerns, socioeconomic influences, cultural beliefs, and other influences associated with psychosocial factors.<b> </b>These results are consistent with diminishing participation of AAs in DNA-related research attributable to a range of factors leading to health disparities. Addressing these factors among marginalized communities, and AAs who have not largely been represented in DNA-related research, will guide insights on how to conduct research in these communities.<b></b></p>


2019 ◽  
Vol 3 (Supplement_1) ◽  
Author(s):  
Karyn Onyeneho ◽  
Linda Thompson ◽  
Priscilla Okunji ◽  
Gina Brown ◽  
Thomas Fungwe

Abstract Objectives The paucity of data for African-Americans (AAs) participating in health-related research (e.g., genomic research in nutrition) is often attributed to difficulty in recruitment and retention. The reasons for such unwillingness to participate remains unclear and could account for health disparities. Studies demonstrate that AAs may be more difficult to recruit and retain in genomic studies due to psychosocial impacts, cultural beliefs and other issues. Historically, these factors have shown to both affect participation and adversely influence health disparities, which may lead to premature death, reduced quality of life, missed economic opportunities, and inequalities. The purpose of this study was to conduct a systematic review to answer the following question: What are the barriers to acceptance of genomic health research among AAs and other minority populations? Methods This systematic review investigates acceptance barriers in AAs participating in health-related research involving DNA. A total of 37 articles met inclusion criteria for this review. Acceptance to participate in health-related research involving DNA were examined from articles published in PubMed and Scopus between 2008–2018. Results were based on feedback collected by trained research assistants and phlebotomists during interviews conducted in groups, face-to-face, via telephone, and responses collected from survey questionnaires. Results AA participation in health-related research is influenced by various pervasive factors including, but not limited to, perceived and/or actual experiences of mistrust and deceptiveness with investigators, misuse of genomic data, unethical research practices, healthcare system distrust, privacy concerns, socioeconomic influences, cultural beliefs and other influences associated with psychosocial factors. Conclusions Results of this review are consistent with literature which shows diminishing participation of AAs in health-related research is attributable to a range of factors leading to growing concerns about health disparities. It is important to address these factors among diverse populations, and AAs in particular, who have not largely been represented in health-related research to promote better health outcomes and understand how to prevent and treat diseases. Funding Sources Howard University.


Author(s):  
Sue Wilkinson

This chapter presents an overview of the main uses of focus groups in health research, and argues that focus groups are an ideal method for gaining access to participants’ own meanings, using with examples from health-related research.


Author(s):  
M. Paz Galupo

There is a growing need to articulate a framework for exploring mental health disparities among individuals with pansexual and queer identities. This chapter provides an overview of the methodological challenges for researching plurisexuality in general, and pansexual and queer identities in particular. Challenges include the conceptualization of sexuality on a continuum, assumptions of alignment normativity, and the use of multiple labels. The author discusses the strategic use of pansexual and queer identity labels and their relation to current health-related research. The author outlines the scant research on pansexual and queer mental health disparities and offers considerations for moving a larger research agenda forward.


PLoS ONE ◽  
2021 ◽  
Vol 16 (6) ◽  
pp. e0252774
Author(s):  
Alison Rouncefield-Swales ◽  
Jane Harris ◽  
Bernie Carter ◽  
Lucy Bray ◽  
Toni Bewley ◽  
...  

Background There has been an increasing interest in how children and young people can be involved in patient and public involvement and engagement (PPIE) in health research. However, relatively little robust evidence exists about which children and young people are reported as being involved or excluded from PPIE; the methods reported as being used to involve them in PPIE; and the reasons presented for their involvement in PPIE and what happens as a result. We performed a scoping review to identify, synthesise and present what is known from the literature about patient and public involvement and engagement activities with children and young people in health related research. Methods Relevant studies were identified by searches in Scopus, Medline, CINAHL, Cochrane and PsychInfo databases, and hand checking of reference lists and grey literature. An adapted version of the Guidance for Reporting Involvement of Patients and the Public (GRIPP2) was used as a framework to collate the data. Two reviewers independently screened articles and decisions were consensually made. Main findings A total of 9805 references were identified (after duplicates were removed) through the literature search, of which 233 full-text articles were assessed for eligibility. Forty studies published between 2000 and 2019 were included in the review. The review reveals ambiguities in the quality of reporting of PPIE with children with clear reporting on demographics and health conditions. The review found that children and young people were commonly involved in multiple stages of research but there was also significant variation in the level at which children and young people were involved in PPIE. Evaluation of the impact of children and young people’s involvement in PPIE was limited. Conclusions Consultation, engagement and participation can all offer children and young people worthwhile ways of contributing to research with the level, purpose and impact of involvement determined by the children and young people themselves. However, careful decisions need to be made to ensure that it is suited to the context, setting and focus so that the desired PPIE impacts are achieved. Improvements should be made to the evaluation and reporting of PPIE in research. This will help researchers and funders to better understand the benefits, challenges and impact of PPIE with children and young people on health research.


Crystals ◽  
2019 ◽  
Vol 9 (10) ◽  
pp. 544
Author(s):  
Lindsay J. Shearer ◽  
Nils O. Petersen

Gold nanoparticles are used in health-related research; however, their effectiveness appears to depend on how well they are internalized and where they are destined to travel. Internalization in cells is efficient if the gold nanoparticles are biocompatible, where one possible pathway of cell entry and processing is clathrin-mediated endocytosis. In this work we studied the co-localization of phospholipid-coated gold nanoparticles (PCAuNPs) with markers of the endocytic pathway (Rab and LAMP-1 proteins) in C2C12 and A549 cells and found that the internalization was consistent with clathrin-mediated endocytosis and was cell type dependent. We further found that the time evolution of uptake and disposal of these PCAuNPs was similar for both cell types, but aggregation was more significant in A549 cells. Our results support the use of these PCAuNPs as models for potential drug delivery platforms.


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