Abstract
Introduction: Underrepresented groups experience health disparities and a history of exploitation by researchers and the health-care system that may contribute to distrust of new treatments and technologies. This study aims to understand how diverse family caregivers and health-care professionals view the benefits and risks of precision medicine as well as cultural dimensions to consider when developing and implementing precision medicine interventions in dementia care. Methods: Eight focus group sessions and one individual interview were conducted over a 6-month period. Fifty-four focus group participants included African-American, American Indian, rural Caucasian, Latino, and West African caregivers and health professionals. The majority of participants were female (73%) and were of Hispanic/Latino ethnicity (68%). About a third of participants identified their race as white. Participants were presented with four hypothetical scenarios related to precision medicine diagnostic and treatment approaches in dementia care: (1) genetic testing for dementia risk, (2) health-care informatics to determine individualized medication dosages based on health and family history, (3) a smartphone application providing dementia caregiving tips, and (4) remote activity monitoring technology in the home. Focus groups' responses were coded using thematic analysis. Results: Participants indicated skepticism regarding the use of precision medicine in their communities. Concerns included cost of precision medicine and insurance coverage; lack of alignment with cultural norms; fraught relationships between communities, health professionals, and researchers; data ownership and privacy; and the trade-off between knowing risk and treatment benefit. Discussion: Establishing relationships with underserved communities is crucial to advancing precision medicine in dementia care. Appropriate engagement with diverse racial, ethnic, and geographic communities may require significant investment but is necessary to deliver precision medicine effectively.
| Original language | English (US) |
|---|---|
| Pages (from-to) | 468-474 |
| Number of pages | 7 |
| Journal | Alzheimer's and Dementia: Translational Research and Clinical Interventions |
| Volume | 5 |
| DOIs | |
| State | Published - 2019 |
Bibliographical note
Funding Information:This research was supported by a Grand Challenges Research Initiative Grant awarded by the Office of the Provost of the University of Minnesota (Pamala Jacobson, Susan Wolf, Constantin Alferis, Kingshuk Sinha, Principal Investigators). The authors thank the participants for their time and valuable perspectives. The authors also thank Rachael Pearson for her research support, Linda Frizzell, Patricia Carlson, Vivian Anugwom, and Centro Tyrone Guzman for moderating and hosting focus groups, and Monica Frazier for her initial analytic assistance. The authors are also grateful to Riley McCarten for his guidance. Author Contributions: J.E.G. conceived of the study and its design, engaged in data collection, and prepared this manuscript. H.M. and L.M. conducted the final qualitative data analysis and drafted the methods, results, and other sections of the article. The sponsor had no role in the paper beyond its generous financial support.
Publisher Copyright:
© 2019 The Authors
UN SDGs
This output contributes to the following UN Sustainable Development Goals (SDGs)
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SDG 10 Reduced Inequalities
Keywords
- Acceptability
- Communication
- Diverse
- Feasibility
- Health literacy
- Precision health
- Technology
- Underserved
- Utility
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