Time, trust, and transparency: Lessons learned from collecting blood biospecimens for cancer research from the Asian American community

Abstract

BACKGROUND Biospecimens from racially diverse groups are needed to advance cancer research. The Asian American Cancer Education Study was developed to increase the number and proportion of blood biospecimen donations from Asian Americans for cancer research. METHODS The authors' targeted approach included 2 types of community engagement, in‐reach (within institution to Asian American patients with cancer) and outreach (external to institution to the general Asian American community). Participants received in‐language biospecimen education followed by the opportunity to donate blood biospecimens. Outreach participants donated through our community biospecimen blood drives, and in‐reach participants consented to donating an extra tube of blood during their routine blood draws as a patient. Donated blood biospecimens were spun down to serum and plasma to be stored in a biorepository or were sent to the laboratory to test for cancer‐related risk factors. RESULTS Three hundred eighty‐eight Asian Americans donated 1127 blood biospecimens for cancer research. Four hundred twenty tubes of plasma and serum are currently being stored at the cancer center's biorepository, 39 tubes have been used for cancer genomic research, and 668 tubes were used to characterize cancer‐related risk factors. CONCLUSIONS Building upon the past decade of the National Cancer Institute‐funded Asian American Network for Cancer Awareness, Research, and Training's foundation of trust and service among Asian Americans, researchers were able to leverage relationships not only to introduce the idea of biospecimen contribution to the community but to also exceed expectations with regard to the quantity of blood biospecimens collected from Asian Americans. Cancer 2018;124:1614‐21. © 2018 American Cancer Society.

Factors associated with biomedical research participation within community‐based samples across 3 National Cancer Institute–designated cancer centers

“…31 We found that participants who spoke Chinese were much less likely to have the opportunity to participate in research and biospecimen donation, which is consistent with previous research. 32 Likewise, in terms of nativity, we found that being born in the United States was significantly associated with being asked to participate in biomedical research. This finding may be due in part to eligibility criteria for research studies, which often are limited to English speakers.…”

“…However, there still is an immense opportunity and need to improve diversity among biomedical research participants. Prior studies regarding diversity in research participation have emphasized raising awareness and education, building community relationships, and implementing community‐based research to increase awareness, access, and ultimately participation in biomedical research . The diversity of the research participants in the current study, and the increased likelihood of participation in biomedical research among underrepresented racial and ethnic groups, may be due in part to each site's collaborations with local, well‐established, and long‐standing community partners and our ongoing outreach, engagement, and research programs …”

“…Adults aged 18 to 34 years reported being more likely to be invited to donate biospecimens . We found that participants who spoke Chinese were much less likely to have the opportunity to participate in research and biospecimen donation, which is consistent with previous research . Likewise, in terms of nativity, we found that being born in the United States was significantly associated with being asked to participate in biomedical research.…”

“…Prior studies regarding diversity in research participation have emphasized raising awareness and education, building community relationships, and implementing community-based research to increase awareness, access, and ultimately participation in biomedical research. 17,[31][32][33] The diversity of the research participants in the current study, and the increased likelihood of participation in biomedical research among underrepresented racial and ethnic groups, may be due in part to each site's collaborations with local, well-established, and long-standing community partners and our ongoing outreach, engagement, and research programs. 13,[34][35][36] The results of the current study also highlight opportunities for NCI-designated cancer centers to build on and leverage community and institutional relationships to better understand and enhance health communication and behavior around biomedical research participation.…”

The Asian American Network for Cancer Awareness, Research, and Training (AANCART)'s contributions toward reducing Asian American cancer health disparities, 2000‐2017

“…We accomplished initiatives that were not proposed originally. In particular, we introduced the collection of blood biospecimens for cancer research as part of community screenings that were subsequently applied in ascertaining the potential of genetic determinants on liver cancer disparities . In the words of a Chinese proverb: “A journey of a thousand miles begins with a single step.” Many steps have been taken on this exciting journey.…”