Community-Based Participatory Research and its Potential Role in Supporting Diversity in Genomic Science

May, Thomas; Bogar, Sandra; Spellecy, Ryan; Kabasenche, William Paul; Craig, Jana; Dick, Danielle M.

doi:10.1353/hpu.2021.0127

Cited by 12 publications

(9 citation statements)

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“…In accordance with these findings, existing literature on engagement in genomics research also supports its being empowering and synergistic. May et al purport that the techniques of community-based participatory research, which emphasise true partnership, should be applied in genomic science [ 44 ]. They affirm that such techniques can empower communities and can provide meaningful strategies to build trust, especially where underrepresented groups are engaged [ 44 ].…”

Section: Discussionmentioning

confidence: 99%

“…May et al purport that the techniques of community-based participatory research, which emphasise true partnership, should be applied in genomic science [ 44 ]. They affirm that such techniques can empower communities and can provide meaningful strategies to build trust, especially where underrepresented groups are engaged [ 44 ]. Watson et al’s conceptual model for engagement in genomics research calls for an approach of “collaborative decision-making, facilitating dialogue, balancing power” that encompasses the priority-setting phase [37, p. 1].…”

Section: Discussionmentioning

confidence: 99%

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How should communities be meaningfully engaged (if at all) when setting priorities for biomedical research? Perspectives from the biomedical research community

2023

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Background There is now rising consensus that community engagement is ethically and scientifically essential for all types of health research. Yet debate continues about the moral aims, methods and appropriate timing in the research cycle for community engagement to occur, and whether the answer should vary between different types of health research. Co-design and collaborative partnership approaches that involve engagement during priority-setting, for example, are common in many forms of applied health research but are not regular practice in biomedical research. In this study, we empirically examine the normative question: should communities be engaged when setting priorities for biomedical research projects, and, if so, how and for what purpose? Methods We conducted in-depth interviews with 31 members of the biomedical research community from the UK, Australia, and African countries who had engaged communities in their work. Interview data were thematically analysed. Results Our study shows that biomedical researchers and community engagement experts strongly support engagement in biomedical research priority-setting, except under certain circumstances where it may be harmful to communities. However, they gave two distinct responses on what ethical purpose it should serve—either empowerment or instrumental goals—and their perspectives on how it should achieve those goals also varied. Three engagement approaches were suggested: community-initiated, synergistic, and consultative. Pre-engagement essentials and barriers to meaningful engagement in biomedical research priority-setting are also reported. Conclusions This study offers initial evidence that meaningful engagement in priority-setting should potentially be defined slightly differently for biomedical research relative to certain types of applied health research and that engagement practice in biomedical research should not be dominated by instrumental goals and approaches, as is presently the case.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

How should communities be meaningfully engaged (if at all) when setting priorities for biomedical research? Perspectives from the biomedical research community

2023

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“…In return, researchers may struggle to gain access to, engage, recruit, and retain systematically underrepresented populations, which further marginalizes these patients 56. Given the longstanding concerns of patients regarding participating in research, more specifically genomic studies, targeted approaches, such as the utilization of community-based participatory research methodologies, may prove to be a valuable tool for engagement 57…”

Section: Discussionmentioning

confidence: 99%

“…56 Given the longstanding concerns of patients regarding participating in research, more specifically genomic studies, targeted approaches, such as the utilization of communitybased participatory research methodologies, may prove to be a valuable tool for engagement. 57 The importance of the gut microbiome and GI dysfunction for infants with POE and NOWS has largely been speculated. 11 Although the condition of McGlothen-Bell et al NOWS is hypothesized to contribute to the presentation of gut alterations, little is known about the characterization of gut microbiota in this infant population.…”

Section: Implications For Practice and Future Studymentioning

confidence: 99%

A Scoping Review of Neonatal Opioid Withdrawal and the Infant Gut Microbiome

McGlothen-Bell¹,

Groër²,

Brownell³

et al. 2023

Advances in Neonatal Care

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Background: While a growing body of literature has established the role of human milk as a mechanism of protection in the formation of the infant gut microbiome, it remains unclear the extent to which this association exists for infants with neonatal opioid withdrawal syndrome. Purpose: The purpose of this scoping review was to describe the current state of the literature regarding the influence of human milk on infant gut microbiota in infants with neonatal opioid withdrawal syndrome. Data Sources: CINAHL, PubMed, and Scopus databases were searched for original studies published from January 2009 through February 2022. Additionally, unpublished studies across relevant trial registries, conference proceedings, websites, and organizations were reviewed for possible inclusion. A total of 1610 articles met selection criteria through database and register searches and 20 through manual reference searches. Study Selection: Inclusion criteria were primary research studies, written in English, published between 2009 and 2022, including a sample of infants with neonatal opioid withdrawal syndrome/neonatal abstinence syndrome, and focusing on the relationship between the receipt of human milk and the infant gut microbiome. Data Extraction: Two authors independently conducted title/abstract and full-text review until there was consensus of study selection. Results: No studies satisfied the inclusion criteria, which resulted in an empty review. Implications for Practice and Research: Findings from this study document the paucity of data exploring the associations between human milk, the infant gut microbiome, and subsequent neonatal opioid withdrawal syndrome. Further, these results highlight the timely importance of prioritizing this area of scientific inquiry.

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“…2016). This failure is due to a variety of reasons we have explored elsewhere -many (if not most) of which center on perspectives of what inhibits participation that is skewed toward the concerns of society's non-exploited and oppressed (May 2020;May et al 2020May et al , 2021. More recent attempts to address diversity in genomic research in particular have centered around protection of privacy, especially data security, as illustrated in the highlighted policies for "privacy and trust" and "data security" of the "All of Us" research program (https://allofus.nih.gov/about/all-us-research-program-protocol) (Mapes.…”

Section: Introductionmentioning

confidence: 99%

Key Contextual Factors Involved with Participation in Medical and Genomic Screening and Research for African American and Caucasian Americans: A Qualitative Inquiry American Journal of Community Genetics

Smith,

Stark,

Kobalter

et al. 2024

Preprint

Self Cite

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Tremendous progress has been made promoting diversity in recruitment for genomic research, yet challenges remain for several racial demographics. Research has cited intertwined fears of racial discrimination and medical mistrust as contributing factors. This study aimed to identify key factors to establishing trust in medical and genomic screening and research among African Americans and White Americans. Participants completed online focus groups and resulting transcripts were analyzed using a qualitative descriptive approach, with content analysis methods based on recommendations by Schreier. Fifteen African Americans and 23 Caucasian Americans participated in the study, 63% of which were female. The mean age of participants was 38.53 (SD = 16.6). The Overarching Theme of Trust is Context Dependent was identified, along with the following five themes describing elements influencing trustworthiness for our participants: 1) Professional Experience, Education, and Training Bolster Trust; 2) Trust Depends on Relationships; 3) Cross-checking Provided Information is Influential in Establishing Trust; 4) Trust is Undermined by Lack of Objectivity and Bias; and 5) Racism is an Embedded Concern and a Medical Trust Limiting Component for African Americans. To effectively address mistrust and promote recruitment of diverse participants, genomic research initiatives must be communicated in a manner that resonates with the specific diverse communities targeted. Our results suggest key factors influencing trust that should be attended to if we are to promote equity appropriately and respectfully by engaging diverse populations in genomic research.

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Community-Based Participatory Research and its Potential Role in Supporting Diversity in Genomic Science

Cited by 12 publications

References 0 publications

How should communities be meaningfully engaged (if at all) when setting priorities for biomedical research? Perspectives from the biomedical research community

How should communities be meaningfully engaged (if at all) when setting priorities for biomedical research? Perspectives from the biomedical research community

A Scoping Review of Neonatal Opioid Withdrawal and the Infant Gut Microbiome

Key Contextual Factors Involved with Participation in Medical and Genomic Screening and Research for African American and Caucasian Americans: A Qualitative Inquiry American Journal of Community Genetics

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