Reservations to Participate in Biospecimen Research among Pacific Islanders

Abstract

Background and Significance Despite high rates of chronic diseases like cancer, diabetes and cardiovascular disease, Pacific Islanders (PIs) are underrepresented in clinical and genetic studies designed to identify the physiological causes of poor health outcomes. There are limited genetic data and biospecimen samples from PIs under study. This paper described why PIs have reservations about donating their biospecimen samples for research. Methods Data were drawn from a pilot study designed to assess the knowledge, attitudes and beliefs surrounding biospecimen research among PIs in southern California. Utilizing a community-based participatory research approach, community and academic partners collected quantitative and qualitative data from a total of 60 PI adults with a mean age of 61 years (SD 13 years). Results “Fear”, “God or Spirituality” and “Lack of Information or Knowledge” were the most cited reasons for not participating in biospecimen research. Respondents younger than age 65 years expressed more concerns about donating their biospecimen samples than those older than age 65 years (p<0.012). No significant gender differences were found (p=0.84). Conclusion Our results emphasize the need to conduct relevant and appropriate biospecimen education among minority communities in order to address misconceptions and build support to increase PI and other minority participation in biospecimen-related studies.

Best Practices for Community-Engaged Research with Pacific Islander Communities in the US and USAPI: A Scoping Review

“…Community advisory board.-More than half (54%) of the reviewed articles mentioned partnering with a community advisory board. 62,[64][65][66][67]69,70,[72][73][74][75][76][78][79][80][81][82][83][84][85][86][87][88][89][90][91][92][93][94][95][98][99][100][101][102][103][104][105][106][107][108][109][110][111][112]116,117,[120][121][122][123]…”

Biospecimen Education Among Pacific Islanders in Southern California

“…Despite the positive findings, several limitations may impact generalizability. First, we recruited a non-probability sample of Pacific Islander adults that may have been more comfortable with research participation due to prior WINCART studies conducted within this community [6,7]. Thus, it is difficult to know how representative our sample was to the larger population in Southern California.…”

“…Critical research is being done using biospecimen samples to draw links between genetics, disease, and cancer disparities, but due to the lack of appropriate representation of minorities in clinical trials, conclusions from this research may not adequately serve all populations [6]. Various reasons have been established as to why minorities have not participated in genetic research, including lack of culturally relevant materials, unwillingness to undergo donation procedures, and concerns around confidentiality, privacy, ownership, and discrimination [3,7,13].…”

“…PIs in Southern California report similar reservations about participating in biospecimen research. The most common concerns include fear of pain or discomfort and not wanting to uncover potential health problems [7]. These concerns are counterbalanced by a belief that biospecimen research would benefit the PI community as a whole [7].…”

“…The most common concerns include fear of pain or discomfort and not wanting to uncover potential health problems [7]. These concerns are counterbalanced by a belief that biospecimen research would benefit the PI community as a whole [7]. Native Hawaiians (NHs) share these views, embracing research as a way to improve health among the NH population yet still voicing concerns about participating in biobanking due to the lack of transparency in current practices and the lack of NH representation in the governance of biobanks with NH specimens [18].…”