Abstract

Background: Representation of diverse ethnic/racial groups is critically important in the development of cancer prevention and treatment strategies. However, representation of diverse ethnic/racial groups has yet to be fully realized, especially among historically disadvantaged minority groups. Ethnic minority groups account for about 75% of Hawai‘i’s population; approximately 55% of the state’s population self-identify as Asian (with the most predominant ethnic/racial groups being Japanese, Filipino, Chinese, and Korean) and approximately 24% as Native Hawaiian/Pacific Islander. Such diversity provided researchers a unique opportunity to characterize the demographic profile of cancer prevention and treatment trials conducted in Hawai ‘i. Methods: In the current study, the gender and ethnic/racial distribution of four national cancer prevention trials and 178 treatment trials conducted in Hawai‘i from 1992 to 2004 were characterized. Results: Native Hawaiian men were significantly less likely to participate in both cancer prevention and treatment trials than Native Hawaiian women. In addition, Native Hawaiian men and women had the lowest proportion of participation in cancer clinical trials in comparison to White and Asian American men and women. Conclusions: Our findings identify gender and ethnic/racial differences in the participation of cancer clinical trial participants in the state of Hawai‘i. This serves as an important indicator for the need of future research to specifically investigate the relationship of culture and other factors on participation. Such research may inform promotional strategies that increase trial participation, with the hopeful prospect of decreasing cancer incidence and increasing quality of life for those diagnosed with cancer.

Highlights

  • Minority populations, which can be defined as those who experience disadvantage in resource access and/or experience persistent social marginalization [1] tend to be burdened by disproportionately high cancer incidence and mortality rates

  • Despite the mandate of the 1993 National Institutes of Health Revitalization Act that minority groups must be included as subjects in all federally funded clinical research, ethnic minorities consistently are underrepresented in cancer clinical trials [3,4,5,6]

  • Cancer prevention trials For the Breast Cancer Prevention Trial (BCPT) and Study of Tamoxifen and Raloxifene (STAR) breast cancer prevention trials conducted in Hawai‘i from 1992 through 2004 (Table 1), Native Hawaiians participated at the lowest rates (9% in the BCPT trial and 11% in the STAR trial), followed by Whites (38% and 27%, respectively), with Asian Americans (53% in the BCPT trial; Japanese 43%, Chinese 7%, Filipino 4%, and Korean 2% and 60% in the STAR trial; Japanese 47%, Chinese 7%, Filipino 6%, and Korean 3%), representing the largest ethnic/racial group

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Summary

Introduction

Minority populations, which can be defined as those who experience disadvantage in resource access and/or experience persistent social marginalization [1] tend to be burdened by disproportionately high cancer incidence and mortality rates. Improved representation in clinical trial research across ethnic/racial groups may lead to the development of prevention efforts and therapies that are more beneficial for all [10,11]. Ethnic minority groups account for about 75% of Hawai‘i’s population; approximately 55% of the state’s population self-identify as Asian (with the most predominant ethnic/racial groups being Japanese, Filipino, Chinese, and Korean) and approximately 24% as Native Hawaiian/Pacific Islander. Such diversity provided researchers a unique opportunity to characterize the demographic profile of cancer prevention and treatment trials conducted in Hawai ‘i

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