Exploring Asian Indian and Pakistani views about cancer and participation in cancer genetics research: toward the development of a community genetics intervention

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 (US-born 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 NVivo11 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 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 population-wide 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.

Differences in attitudes toward genetic testing among the public, patients, and health-care professionals in Korea

“…To our knowledge, research has yet to exhaustively explore public awareness of and attitudes toward genetic testing in Asia, such as India, Japan, Taiwan, China, and South Korea, and the few that have attempted to do so suggest a need to increase awareness [15][16][17][18]. Accordingly, through the present study, we sought (1) to examine awareness of genetic testing in Korea; (2) to assess difference in attitudes toward genetic testing among the general public, cancer patients, and health-care professionals; and (3) to suggest ways in which to improve and utilize knowledge of genetic testing for better patient care.…”

Exploring Asian Indian views about cancer and participation in cancer research: an evaluation of a culturally tailored educational intervention

“…Moderated discussions with members of the AI population have revealed that individuals were unaware of family disease history and that they could benefit from genetic testing to assess risk. Reasons for hindrance to cancer risk discussions among AIs in our prior work included not wanting to cause stress to family members, fear of damage to family status in society with impact on marriage prospects, and cancer-related stigma (Leader et al 2017).…”

“…In one of the first US-based studies, our team conducted 4 focus groups to explore knowledge, attitudes, and beliefs about cancer risk and prevention among the AI population in the greater Philadelphia area (Leader et al 2017). Results from the focus groups showed that (1) historically, more emphasis was placed on the treatment rather than the prevention of cancer, (2) cancer is highly stigmatized and family privacy and community standing greatly limit discussions of family and personal cancer history, (3) fatalism and karma reduced interest in seeking genetic evaluation for personal cancer risk, and (4) concern regarding access to health care services and financial difficulties hinders cancer screening.…”

“…Results from the focus groups showed that (1) historically, more emphasis was placed on the treatment rather than the prevention of cancer, (2) cancer is highly stigmatized and family privacy and community standing greatly limit discussions of family and personal cancer history, (3) fatalism and karma reduced interest in seeking genetic evaluation for personal cancer risk, and (4) concern regarding access to health care services and financial difficulties hinders cancer screening. Findings from the focus groups emphasized the importance of understanding AIs' perceptions about cancer and participation in research, such as a medical research study or clinical trial, to inform the design of effective educational and clinical initiatives to meet their needs (Leader et al 2017).…”

Asian Americans are less willing than other racial groups to participate in health research

“…Cultural barriers were not assessed in this study, but other studies have found that culture and language barriers are associated with a lack of confidence [18], the feeling of not belonging to the community [33], and low knowledge about health research [34] which may in turn, contribute to lower willingness to participate in research among Asian Americans. Advertising the study using culturally and linguistically relevant recruitment materials [35], increasing the number of Asian American CHWs and including Asian American researchers as part of the recruitment team [18] may help buffer the language and cultural barriers and increase Asian Americans' participation in research.…”