Acceptance of Mobile Health in Communities Underrepresented in Biomedical Research: Barriers and Ethical Considerations for Scientists

Camille Nebeker; Kate Murray; Christina Holub; Jessica Haughton; Elva M Arredondo

doi:10.2196/mhealth.6494

Acceptance of Mobile Health in Communities Underrepresented in Biomedical Research: Barriers and Ethical Considerations for Scientists

JMIR Mhealth Uhealth. 2017 Jun 28;5(6):e87. doi: 10.2196/mhealth.6494.

Authors

Camille Nebeker^{1

2

3}, Kate Murray^{3

4}, Christina Holub⁵, Jessica Haughton⁶, Elva M Arredondo⁶

Affiliations

¹ Center for Wireless and Population Health Systems, Qualcomm Institute, University of California, San Diego, La Jolla, CA, United States.
² Scripps Translational Science Institute, Scripps Health, La Jolla, CA, United States.
³ Department of Family Medicine and Public Health, School of Medicine, University of California, San Diego, La Jolla, CA, United States.
⁴ School of Psychology and Counselling, Queensland University of Technology, Queensland, Australia.
⁵ Department of Public Health, California State University San Marcos, San Marcos, CA, United States.
⁶ Institute of Behavioral and Community Health, Graduate School of Public Health, San Diego State University, San Diego, CA, United States.

Abstract

Background: The rapid expansion of direct-to-consumer wearable fitness products (eg, Flex 2, Fitbit) and research-grade sensors (eg, SenseCam, Microsoft Research; activPAL, PAL Technologies) coincides with new opportunities for biomedical and behavioral researchers. Underserved communities report among the highest rates of chronic disease and could benefit from mobile technologies designed to facilitate awareness of health behaviors. However, new and nuanced ethical issues are introduced with new technologies, which are challenging both institutional review boards (IRBs) and researchers alike. Given the potential benefits of such technologies, ethical and regulatory concerns must be carefully considered.

Objective: Our aim was to understand potential barriers to using wearable sensors among members of Latino, Somali and Native Hawaiian Pacific Islander (NHPI) communities. These ethnic groups report high rates of disparate health conditions and could benefit from wearable technologies that translate the connection between physical activity and desired health outcomes. Moreover, these groups are traditionally under-represented in biomedical research.

Methods: We independently conducted formative research with individuals from southern California, who identified as Latino, Somali, or Native Hawaiian Pacific Islander (NHPI). Data collection methods included survey (NHPI), interview (Latino), and focus group (Somali) with analysis focusing on cross-cutting themes.

Results: The results pointed to gaps in informed consent, challenges to data management (ie, participant privacy, data confidentiality, and data sharing conventions), social implications (ie, unwanted attention), and legal risks (ie, potential deportation).

Conclusions: Results shed light on concerns that may escalate the digital divide. Recommendations include suggestions for researchers and IRBs to collaborate with a goal of developing meaningful and ethical practices that are responsive to diverse research participants who can benefit from technology-enabled research methods.

Trial registration: ClinicalTrials.gov NCT02505165; https://clinicaltrials.gov/ct2/show/NCT02505165 (Archived by WebCite at http://www.Webcitation.org/6r9ZSUgoT).

Keywords: cultural diversity; ethics committees; ethics, research; informed consent; privacy; research; telemedicine.

©Camille Nebeker, Kate Murray, Christina Holub, Jessica Haughton, Elva M Arredondo. Originally published in JMIR Mhealth and Uhealth (http://mhealth.jmir.org), 28.06.2017.

Associated data

ClinicalTrials.gov/NCT02505165

Abstract

Associated data

Grants and funding