TY - JOUR
T1 - Acceptance of mobile health in communities underrepresented in biomedical research
T2 - Barriers and ethical considerations for scientists
AU - Nebeker, Camille
AU - Murray, Kate
AU - Holub, Christina
AU - Haughton, Jessica
AU - Arredondo, Elva M.
N1 - Publisher Copyright:
© Camille Nebeker, Kate Murray, Christina Holub, Jessica Haughton, Elva M Arredondo.
PY - 2017/6
Y1 - 2017/6
N2 - 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.
AB - 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.
KW - Cultural diversity
KW - Ethics
KW - Ethics committees
KW - Informed consent
KW - Privacy
KW - Research
KW - Research
KW - Telemedicine
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U2 - 10.2196/mhealth.6494
DO - 10.2196/mhealth.6494
M3 - Article
AN - SCOPUS:85035028566
SN - 2291-5222
VL - 5
JO - JMIR mHealth and uHealth
JF - JMIR mHealth and uHealth
IS - 6
M1 - e87
ER -