Ethical, Legal, and Social Issues in the Translation of Genomics Into Health Care

Badzek, Laurie; Henaghan, Mark; Turner, Martha; Monsen, Rita Black

doi:10.1111/jnu.12000

Cited by 40 publications

(24 citation statements)

References 17 publications

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“…It is imperative that both the patient and provider understand and comprehend issues such as human rights, harm and benefit, transparency, and informed consent. 38 Differences across racial/ethnic groups in understanding the risks and benefits of genomic medicine could result in disparities of care related to use, rather than access, to genomic medicine and personalized care.…”

Section: Challengesmentioning

confidence: 99%

Achieving Equity in an Evolving Healthcare System: Opportunities and Challenges

Williams

Walker

Egede

2016

The American Journal of the Medical Sciences

100

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For decades, disparities in health have been well documented in the United States and regrettably, remain prevalent despite evidence and appeals for their elimination. Compared to the majority, racial and ethnic minorities continue to have poorer health status and health outcomes for most chronic conditions including diabetes, cardiovascular disease, cancer, and end-stage renal disease. Many factors, such as affordability, access, and diversity in the healthcare system, influence care and outcomes, creating challenges that make the task of eliminating health disparities and achieving health equity daunting and elusive. Novel strategies are needed to bring about much needed change in the complex and evolving United States health care system. Although not exhaustive, opportunities such as 1) developing standardized race measurements across health systems, 2) implementing effective interventions, 3) improving workforce diversity, 4) utilizing technological advances, and 5) adopting practices such as personalized medicine may serve as appropriate starting points for moving towards health equity. Over the past several decades, diversity in the U.S. population has increased significantly and is expected to increase exponentially in the near future. As the population becomes more diverse, it is important to recognize the possibilities of new and emerging disparities. It is imperative that steps are taken to eliminate the current gap in care and prevent new disparities from developing. Therefore, we present challenges and offer recommendations for facilitating the process of eliminating health disparities and achieving health equity across diverse populations.

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Section: Challengesmentioning

confidence: 99%

Achieving Equity in an Evolving Healthcare System: Opportunities and Challenges

Williams

Walker

Egede

2016

The American Journal of the Medical Sciences

100

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“…It has been suggested that a broader understanding of how genomics relates to chronic conditions could help clinicians better assess risk and plan management of patients (Taylor et al, 2013). Conversely, it is obligatory that providers understand the community knowledge so that care can be comprehensive and culturally sensitive (Badzek et al, 2013). …”

Section: Discussionmentioning

confidence: 99%

“…The evidence base on epigenetics and genomic literacy (as defined above) is developing (Badzek, Henaghan, Turner, & Monsen, 2013; Calzone, Jenkins, Nicol, et al, 2013; Conley et al, 2013; Roberts, Dolinoy, & Tarini, 2014). Ensuring the public has access to the knowledge and skills needed to keep up with the technical intricacies of “genetic and genomic information” has been a focus of The American Public Health Association, Health People 2020, and the Institute of Medicine.…”

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confidence: 99%

Understanding Genomic Knowledge in Rural Appalachia: The West Virginia Genome Community Project

Mallow

Theeke

Crawford

et al. 2016

OJRNHC

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Purpose Rural communities have limited knowledge about genetics and genomics and are also underrepresented in genomic education initiatives. The purpose of this project was to assess genomic and epigenetic knowledge and beliefs in rural West Virginia. Sample A total of 93 participants from three communities participated in focus groups and 68 participants completed a demographic survey. The age of the respondents ranged from 21 to 81 years. Most respondents had a household income of less than $40,000, were female and most were married, completed at least a HS/GED or some college education working either part-time or full-time. Method A Community Based Participatory Research process with focus groups and demographic questionnaires was used. Findings Most participants had a basic understanding of genetics and epigenetics, but not genomics. Participants reported not knowing much of their family history and that their elders did not discuss such information. If the conversations occurred, it was only during times of crisis or an illness event. Mental health and substance abuse are topics that are not discussed with family in this rural population. Conclusions Most of the efforts surrounding genetic/genomic understanding have focused on urban populations. This project is the first of its kind in West Virginia and has begun to lay the much needed infrastructure for developing educational initiatives and extending genomic research projects into our rural Appalachian communities. By empowering the public with education, regarding the influential role genetics, genomics, and epigenetics have on their health, we can begin to tackle the complex task of initiating behavior changes that will promote the health and well-being of individuals, families and communities.

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“…[7] The influence on practice is swiftly advancing and with emerging ethical, legal and social issues, including confidentiality, therapeutic decision-making capacity, informed consent, genetic screening and testing, risk assessment, prevention, diagnosis, prognosis and research are necessary to guarantee the delivery of appropriate and unprejudiced health care for all. [8,9] The clinical significance requires a broad familiarity of genetic-genomic concepts, staying informed of new genomic technology and being able to incorporate this information through informed comprehensive nursing practice. [2] Expanding on the core proficiencies, prominent national and international nursing organizations established guidelines for the integration of contemporary G-G knowledge related to nursing, instituting a foundational knowledge base as a basic requirement in nursing education.…”

Section: Literature Reviewmentioning

confidence: 99%

Comparison of perceived genetic-genomic knowledge of nurse educators and graduate degree nursing students

Sharoff

2017

JNEP

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Objective and rationale: Comparison of self-perceived genetic-genomic knowledge of nurse educators and graduate degree nursing students enrolled at a large diverse urban university in the US. Comfort level in performing genetic-genomic related tasks and its perceived relevance to nursing also explored. Practicing clinicians are expected to have Genetics and Genomics (G-G) knowledge to provide care to a client and their family with a genetic condition and faculty expected to be able to educate these practitioners. Methods: Two groups of participants asked to complete identical survey instrument, Genetics/Genomics Literacy Assessment (GGLA). Data was collected from September 2014-December 2015. Deans/Directors from university's nursing programs (N = 17) sent introductory email with survey link and asked to forward to their faculty. APRN/DNP students at one of the university's graduate programs sent email with survey link. Results: Fifty-three nurse educators and thirty-six graduate degree nursing students completed survey. Comparison of categorical data revealed nurse educators perceived G-G knowledge correlated to graduate degree students. Majority of participants demonstrated significantly lower correct percentages (< 55%) correct] to survey questions. Majority of participants (> 75%) attitude agree it is important for nurses to know this content and be able to teach this material. However, majority (> 75%) were not comfortable with teaching or explaining this material. Conclusions: Nurse educators need to be knowledgeable in order to educate their students who are expected to practice at advanced efficiency. A prepared nursing workforce is crucial for the translation of G-G integration into personalized precision healthcare.

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Ethical, Legal, and Social Issues in the Translation of Genomics Into Health Care

Cited by 40 publications

References 17 publications

Achieving Equity in an Evolving Healthcare System: Opportunities and Challenges

Achieving Equity in an Evolving Healthcare System: Opportunities and Challenges

Understanding Genomic Knowledge in Rural Appalachia: The West Virginia Genome Community Project

Comparison of perceived genetic-genomic knowledge of nurse educators and graduate degree nursing students

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