Gene–environment interactions and health inequalities: views of underserved communities

Goldenberg, Aaron J.; Hartmann, Christopher D.; Morello, Laura; Brooks, Sanjur; Colón-Zimmermann, Kari; Marshall, Patricia A.

doi:10.1007/s12687-013-0143-3

Cited by 17 publications

(12 citation statements)

References 38 publications

(39 reference statements)

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“…In the 10 years since the Human Genome Project was completed, rapid changes in genetic technology have resulted in substantial changes in the care of patients with these and other chronic diseases, which disproportionally affected racial and ethnic minority groups (Goldenberg et al, 2013; Wallace et al, 2011). This rapid infusion of genetic-genomic knowledge and changes in clinical practice present both a burden and opportunity for multi-ethnic minority nurses.…”

Section: Discussionmentioning

confidence: 99%

Multi‐Ethnic Minority Nurses’ Knowledge and Practice of Genetics and Genomics

Coleman

Calzone

Jenkins

et al. 2014

J of Nursing Scholarship

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Purpose Exploratory studies establishing how well nurses have integrated genomics into practice have demonstrated there remains opportunity for education. However, little is known about educational gaps in multi-ethnic minority nurse populations. The purpose of this study was to determine minority nurses’ beliefs, practices, and competency in integrating genetics-genomics information into practice using an online survey tool. Design A cross-sectional survey with registered nurses (RNs) from the participating National Coalition of Ethnic Minority Organizations (NCEMNA). Two phases were used: Phase one had a sample of 27 nurses who determined the feasibility of an online approach to survey completion and need for tool revision. Phase two was a main survey with 389 participants who completed the revised survey. The survey ascertained the genomic knowledge, beliefs, and practice of a sample of multi-ethnic minority nurses who were members of associations comprising the NCEMNA. Methods The survey was administered online. Descriptive survey responses were analyzed using frequencies and percentages. Categorical responses in which comparisons were analyzed used chi square tests. Findings About 40% of the respondents held a master’s degree (39%) and 42% worked in direct patient care. The majority of respondents (79%) reported that education in genomics was important. Ninety-five percent agreed or strongly agreed that family health history could identify at-risk families, 85% reported knowing how to complete a second- and third-generation family history, and 63% felt family history was important to nursing. Conversely, 50% of the respondents felt that their understanding of the genetics of common disease was fair or poor, supported by 54% incorrectly reporting they thought heart disease and diabetes are caused by a single gene variant. Only 30% reported taking a genetics course since licensure, and 94% reported interest in learning more about genomics. Eighty-four percent believed that their ethnic minority nurses’ organizations should have a visible role in genetics and genomics in their communities. Conclusions Most respondents felt genomics is important to integrate into practice but demonstrated knowledge deficits. There was strong interest in the need for continuing education and the role of the ethnic minority organizations in facilitating the continuing education efforts. This study provides evidence of the need for targeted genomic education to prepare ethnic minority nurses to better translate genetics and genomics into practice. Clinical Relevance Genomics is critical to the practice of all nurses, most especially family health history assessment and the genomics of common complex diseases. There is a great opportunity and interest to address the genetic-genomic knowledge deficits in the nursing workforce as a strategy to impact patient outcomes.

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Section: Discussionmentioning

confidence: 99%

Multi‐Ethnic Minority Nurses’ Knowledge and Practice of Genetics and Genomics

Coleman

Calzone

Jenkins

et al. 2014

J of Nursing Scholarship

View full text Add to dashboard Cite

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“…Qualitative work has demonstrated that members of underserved communities may not be particularly interested in the added value of personalized genetic information relative to more significant social and environmental factors contributing to health inequities. 15 Although we were unable to access differences among underserved racial/ethnic minority patients, pharmacogenomics hold the promise to reduce health disparities through actionable observations of variable drug responses across ethnic groups for certain conditions. 16 However, these advances concomitantly hold the risk to widen disparities through reification of race as a genetic, rather than social construct, with implications for exacerbated discrimination.…”

mentioning

confidence: 99%

Are patients willing to incur out-of-pocket costs for pharmacogenomic testing?

et al. 2016

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“…Pharmacogenetics introduces a new aspect of health education when disseminating pharmacogenetics research results to the community and when implementing pharmacogenetics tools in health care delivery. In the Forum, attendees were curious about pharmacogenetics but wanted the explanation to be relatable, a finding similar to others (Goldenberg et al, 2013;. Educating AN/AI community leaders and tribal health care administration on genetics prior to study initiation has been described; however, community-wide education on genetics in relation to dissemination was not discussed .…”

Section: Discussionmentioning

confidence: 81%

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2018

AIANMHR

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AMERICAN INDIAN AND ALASKA NATIVE MENTAL HEALTH RESEARCH i FOREWORDWe are delighted to showcase a unique process for reaching out to, engaging, and disseminating research conducted among Alaska Native people. The Southcentral Foundation, notably its Research Department, led by Dr. Denise Dillard and her colleagues -the authors of this special issue − is widely respected for its deep commitment to pursuing research relevant to its customer/owners. Indeed, simply referring to their patient population in this fashion underscores the alignment of their mission, values, and actions. Frankly, I know of no other entity, tribal or otherwise, so fully dedicated in principal as well as practice to ensuring that its research is driven by stakeholders, that the results are translated into terms meaningful to them, that the findings reflect their perspectives, that the attendant insights are applied with local benefit, and that this work is undertaken in a scientifically rigorous manner that contributes to our understanding of the health and well-being of this special population. The articles herein testify to the effort required of such work and the potential return on investment for all participants.Unfortunately, much of today's conversation about outreach to, engagement of, and dissemination among Native communities proceeds at a level of abstraction that offers little guidance about actual process. Not so here. The authors describe in detail the nature of their research, steps taken to communicate findings to key stakeholders, the latter's reactions, and implications for this process. Their candid discussion of the challenges that arose during this endeavor represents a refreshingly authentic analysis of a difficult subject, the mechanics of which are often glossed over in the rush to exhort others to engage tribal communities. Of particular value is the authors' reflection on how the communication strategies available to them through the Southcentral Foundation can be mobilized to maintain the momentum of their initial efforts and to reinforce the reciprocity as well as transparency that characterized this undertaking. The lessons learned, and shared in the pages to follow, are important ones. Thank you for stretching yourselves beyond the typical role of researcher-as-scientist to illustrate these lessons and the wisdom contained therein.Section I of this special issue describes the background information shared with Alaska Native Health Research Forum attendees, the structure and content of the Forum itself, and the methods used to gather community feedback. CHALLENGES IN ENGAGING 3In this article of the special issue, we describe the background information shared with attendees of the Alaska Native Health Research Forum (Forum) to position activities within the local context. We briefly present the history of health care with Alaska Native and American Indian (AN/AI) people in Alaska and the current Southcentral Foundation (SCF) system of care. We then describe the history of research and the SCF Research Department'...

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Gene–environment interactions and health inequalities: views of underserved communities

Cited by 17 publications

References 38 publications

Multi‐Ethnic Minority Nurses’ Knowledge and Practice of Genetics and Genomics

Multi‐Ethnic Minority Nurses’ Knowledge and Practice of Genetics and Genomics

Are patients willing to incur out-of-pocket costs for pharmacogenomic testing?

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