Exploring Asian Indian and Pakistani views about cancer and participation in cancer genetics research: toward the develo
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ORIGINAL ARTICLE
Exploring Asian Indian and Pakistani views about cancer and participation in cancer genetics research: toward the development of a community genetics intervention Amy E. Leader 1 & Salini Mohanty 2 & Preethi Selvan 3 & Ray Lum 4 & Veda N. Giri 1
Received: 27 February 2017 / Accepted: 8 June 2017 # Springer-Verlag GmbH Germany 2017
Abstract Cancer is a leading cause of mortality among the three million Asian Indian/Pakistanis (AIPs) in the USA. AIPs have traditionally been underrepresented in cancer-related research, although reasons remain largely unexplored. We sought to understand AIP’s awareness and perceptions of cancer to improve their participation in risk assessment and cancer genetics research. Four focus groups, stratified by gender and birthplace (USborn vs. foreign-born), were held at an AIP cultural center. Discussions focused on knowledge and awareness of cancer risk; how AIP culture influences cancer perceptions; access to health care services for cancer screening, diagnosis, or treatment; and willingness to or experiences with participating in cancer genetics research. Sessions were audio-recorded, transcribed verbatim, and content analyzed using NVivo®11 for dominant themes. Thirty-two AIP adults participated in a focus group. Information on family cancer history is challenging to obtain due to the desire for privacy, cancer stigma, and loss of medical records. Interest in genetic testing for cancer risk was mixed: some were in favor of
* Amy E. Leader [email protected]
1
Department of Medical Oncology, Sidney Kimmel Cancer Center, Thomas Jefferson University, Philadelphia, PA, USA
2
Department of Community Health and Prevention, Dornsife School of Public Health, Drexel University, Philadelphia, PA, USA
3
College of Population Health, Thomas Jefferson University, Philadelphia, PA, USA
4
Department of Management and Health Policy, Dornsife School of Public Health, Drexel University, Philadelphia, PA, USA
knowing their personal risk, yet many noted that future generations in their family would benefit more by knowing their risk. Participants felt that the AIP community has largely been overlooked in recruitment efforts for research studies. Recommendations for improving recruitment efforts included partnering with community events and festivities, posting culturally and linguistically relevant recruitment materials, and focusing on populationwide health improvement. Understanding the culture and perceptions of AIPs, separate from Asian Americans at large, will allow for more tailored approaches for including this population in cancer genetics research. Keywords Ethnic minority . Cancer risk assessment . Genetic testing . Participation in medical research
Background Asian Americans represented 6.3% of the total US population in 2014 and are the fastest growing racial/ethnic group in the USA (Colby and Ortman 2014). Growth in the population is driven dually by immigration as well as native births. Asian Indians and Pakistanis (AIP), considered to be those originatin
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