Pilot Project

点击翻译按钮获取中文摘要

The practice of biospecimen collection is not new; however, the National Cancer Institute (NCI) has recently made an extensive effort to develop guidelines for improving biospecimen and data quality for biobanking (1). The interest in the science of biorepository and biospecimen collection is still growing not only among cancer researchers but patients as well (2). Recently, Ambrosone et al. reported an overview of the necessary procedures for establishment of a biorepository (3). Biorepositories play a significant role in cancer research as biospecimens are stored and later used to investigate cancer etiology, progression and prognosis and development of biomarkers for eariy detection. Although the concept of developing an infrastructure for biorepositories and the benefits for donating biospecimens for cancer research makes perfect sense for cancer researchers and patients, little effort has been made by researchers from biorepositories to inform or educate the general population about the research being conducted in biobanking and the importance of biospecimens for cancer research (4). Providing transparent communication and education is important to counter the historical lack of trust many people have in researchers/institutions resulting declining consent options for participation in biorepositories (4, 5). Mistrust in the research community and health care system has been documented among African-Americans (6); little is known, however, about these issues among other ethnic groups, including Hispanics. The importance of addressing ethical issues for biobanking gives significance and consideration to the diverse population in the US. Before the collection of biological specimens for biobanking and development of biorepositories, several ethical and legal issues should be taken into account and these should be accessible to patients, clinicians and scientists. One primary ethical issue is the recognition that the needs of pafients always must come first (7). Although it is important to maintain the scientific progress, researchers must aim for that balance between patients' protection and research progress. Minority groups in the US with low rates of education and other several health care disadvantages are less informed about patients' rights and benefits for biobanking. The Center to Reduce Cancer Health Disparities (CRCHD) ofthe NCI established the The NCIGeographic Management Program (BMaP) to ensure the adequate and continuous supply of high-quality human biospecimens from mult-ethnic communifies for cancer research (8). In addifion, BMaP takes into account the cultural sensitivities of diverse communities in specific regions. Similarly and sharing common goals, other programs (CaBIG Community Website and Cancer Human Biobank-caHUB) developed by NCI have transformed the concept of biobanking by enabling the cancer community (researchers, physicians, and patients) to share data and knowledge (9). However, identifying factors that motivates people to participate in biologic specimen collecfion for biobanking is still not well explored. The purpose of this pilot study is to describe socio-demographic, acculturation, and psychosocial factors that influence Mexican Americans' decisions to provide biologic specimens for biobanking or blood collection in three cohorts: the Mano A Mano - Mexican-American Cohort Study in Harris County, Salud Para Su Corazon, El Paso and CCHC, Brownsville, TX. Furthermore, because there are differences across the cohorts in consent procedures, specimen collection protocols, and information and results provided to participants following provision of samples, we will have the opportunity to explore how these variafions may infiuence participation decisions. We propose to use both quantitative and qualitative methods to determine factors that infiuenced the decision to donate biological samples among enrollees of a large population- and community based studies in Houston, El Paso and Brownsville. We further propose to explore factors could influence participafion in biobanking among Mexican Americans living along the Texas-Mexico border (El Paso and Brownsville). The significance of describing and understanding sociodemographic and acculturation factors that influence biospecimen donation for biobanking in cancer research among Hispanics is based on recent literature reporting the Hispanic populafion as the fastest minority group in the US. In the US, the Hispanic population has approximately 60% Mexican heritage. Mexican-Americans have high prevalence of several cancer risk factors, including ovenweight/obesity, diabetes and metabolic syndrome (10, 11), If these modifiable risk factors continue with their increasing trend, it is estimated that in the next 10 years, the number of Mexican-Americans diagnosed with cancer could increase. Informing and educating Mexican-Americans about their important role in the progress of scientific research, without comprising their patient rights and privacy, and benefits for participating in biobanking is warranted. Motivation in the form of altruism to donate biologic samples could be an educafional tool to be pursued among Mexican-Americans.