文章基本信息

标题：“I Did It for Us and I Would Do It Again”: Perspectives of Rural Latinos on Providing Biospecimens for Research
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作者：Sarah D. Hohl ; Claire Gonzalez ; Elizabeth Carosso 等
期刊名称：American journal of public health
印刷版ISSN：0090-0036
出版年度：2014
卷号：104
期号：5
页码：911-916
DOI：10.2105/AJPH.2013.301726
语种：English
出版社：American Public Health Association
摘要：Objectives. We elicited perspectives of rural Latino farmworkers and non-farmworkers about their participation in a community-based participatory pesticides exposure study in which they provided multiple biospecimens. Methods. Between March and April 2012, we conducted semistructured, one-on-one interviews with 39 rural Latino farmworkers and non-farmworkers in Washington State (n = 39). Nineteen open-ended interview questions aimed to elicit participants’ attitudes toward, expectations and experiences of biospecimen collection for research, and willingness to participate in future biomedical research studies. We reviewed and coded transcriptions using qualitative principles of grounded theory in which concepts were identified and themes derived from interview data. Results. We grouped themes into 3 major categories: (1) motivation to participate, (2) challenges of participation, and (3) perceived rewards of participation. Many participants were motivated by the perceived importance of the study topic and a desire to acquire and contribute to new knowledge. Respondents said that the benefits of participation outweighed the challenges, and many expressed satisfaction to be able to contribute to research that would benefit future generations. Conclusions. Our findings supported the use of community-based participatory research to engage minorities as participants and invested parties in such studies. Recent breakthroughs in the fields of genomics, proteomics, and personalized medicine highlight the importance of acquiring a high volume of quality biospecimen samples for research. This need has garnered attention from major academic and research institutions, including the National Cancer Institute. 1,2 Although advances present possibilities to improve individualized health care and to reduce the gap of health disparities, results are only generalizable if samples are comprehensive and representative of the population. However, racial and ethnic minorities continue to be underrepresented in biomedical research. 3–6 Some researchers are not setting or meeting recruitment goals for minority groups. 7 Simultaneously, inequalities in health care and health outcomes disproportionately influence racial and ethnic minorities, highlighting the importance of obtaining biospecimens from these groups. 8 Currently, the 52 million Latinos in the United States are the largest and fastest growing ethnic minority. 8,9 They experience a higher burden of chronic diseases than non-Latino Whites, with cancer as the leading cause of death among Latinos. 10,11 Like other minorities, Latinos are less likely than non-Latino Whites to participate in biomedical research. 5,6 Barriers to recruiting minorities into research studies—including participant fear and mistrust, sometimes because of a history of exploitation, lack of culturally appropriate strategies, and structural barriers—are well documented. 10,12–19 Only recently have researchers explored the attitudes and beliefs regarding participation in biomedical research among Latinos and other minorities, noting that distrust of researchers and lack of understanding of biomedical research serve as barriers to participation. 16,20,21 Some have examined public perception about establishment of biospecimens repositories and use of biospecimens for various research studies, noting concerns about the use of biospecimens. 22–24 To our knowledge, however, no study has described the experiences of a minority population that has provided biospecimens for research. A possible framework for overcoming the challenges associated with collection of biospecimens in minorities is the community-based participatory research (CPBR) approach, which promotes equitable exchange between researchers and community members, and can address barriers to minority recruitment and retention. 25–28 Using these CPBR methods, the Center for Child Environmental Health Risks Research at the University of Washington and the Fred Hutchinson Cancer Research Center have explored the environmental health risks posed by pesticide exposure in Latino farmworker families for more than 13 years in the Yakima Valley of eastern Washington, an agricultural and predominantly Latino community. In 1999, investigators formalized partnerships with community organizations and individuals in the Yakima Valley and formed an 18-member Community Advisory Board (CAB) to work specifically with the CBPR community project. The CAB has been maintained throughout the 13 years of the study and has contributed research questions and hypotheses, as well as addressed dissemination of study findings. 29–36 The exposure study also employs bilingual promotores , who are trusted lay health workers from the community trained to deliver culturally appropriate messages and support participants throughout each phase of the study. At the conclusion of each phase of a study, the researchers and promotores hosted a Town Hall forum with CAB and community members to discuss study results and highlight the study’s local relevance. In this study, we examined the experiences of Latino farmworkers and non-farmworkers in the Yakima Valley who had participated in the CBPR-framed pesticide exposure study in which they were asked to provide multiple biospecimen samples over a year-long period. We used a qualitative approach to gather an in-depth understanding of this population’s perceptions and experiences when providing biospecimens and to ascertain their willingness to participate in future studies involving biospecimen collection.