Pilot Project

生物样本采集的实践并不新鲜;然而，美国国家癌症研究所（NCI）最近做出了广泛的努力，制定了提高生物样本和生物库数据质量的指南（1）。对生物储存库和生物标本收集科学的兴趣不仅在癌症研究人员中，而且在患者中也在增长（2）。最近，Ambrosone等人报告了建立生物储存库的必要程序概述（3）。生物储存库在癌症中发挥着重要作用 研究作为生物样本被储存，并且随后用于研究癌症病因、进展和预后以及用于早期检测的生物标志物的开发。尽管为生物储存库开发基础设施的概念以及为癌症研究捐赠生物标本的好处对癌症研究人员和患者来说是完全有意义的，但生物储存库的研究人员几乎没有做出任何努力来告知或教育 一般人群关于生物库中正在进行的研究和生物标本对癌症研究的重要性（4）。提供透明的沟通和教育是很重要的，以应对历史上缺乏信任，许多人在研究人员/机构导致减少同意参与生物储存库的选择（4，5）。对研究界和医疗保健系统的不信任一直是 记录在非洲裔美国人（6）;很少有人知道，但是，关于这些问题的其他种族群体，包括西班牙裔。 解决生物样本库伦理问题的重要性为美国的多样化人群提供了重要性和考虑。在收集生物样本库和开发生物储存库之前，应考虑几个伦理和法律的问题，这些问题应向患者、临床医生和科学家开放。一个主要的伦理问题是认识到病人的需要 总是第一位的（7）虽然保持科学进步很重要，但研究人员必须在保护患者和研究进步之间取得平衡。美国的少数民族受教育程度低，在医疗保健方面处于不利地位，他们对病人的权利和福利了解得较少， 生物库NCI的减少癌症健康差异中心（CRCHD）建立了NCI地理管理计划（BMaP），以确保从多民族社区为癌症研究提供充足和持续的高质量人类生物标本（8）。此外，《毛里求斯行动计划》还考虑到特定区域不同社区的文化敏感性。相似与共享 为了实现这一目标，NCI开发的其他项目（CaBIG社区网站和癌症人类生物库-caHUB）通过使癌症社区（研究人员、医生和患者）共享数据和知识，改变了生物库的概念（9）。然而，识别激励人们参与生物样本采集的因素仍然没有得到很好的探索。 本项初步研究的目的是描述影响墨西哥裔美国人决定提供生物样本库或血液采集的三个队列的社会人口统计学、文化适应和心理社会因素：在哈里斯县（Salud帕拉苏科拉松，埃尔帕索）和CCHC（布朗斯维尔，德克萨斯州）进行的Mano A Mano -墨西哥裔美国人队列研究。此外，由于各队列之间存在差异， 同意程序、标本采集方案以及提供样本后提供给参与者的信息和结果，我们将有机会探索这些变化如何影响参与决策。我们建议使用定量和定性的方法来确定的因素，影响决定捐赠生物样本之间的一个大的人口和社区为基础的研究在休斯敦，埃尔帕索和布朗斯维尔的登记。我们进一步建议探索可能影响 生活在沿着德克萨斯-墨西哥边境（埃尔帕索和布朗斯维尔）的墨西哥裔美国人参与生物库。 描述和理解影响西班牙裔癌症研究中生物样本库生物样本捐赠的社会人口统计学和文化适应因素的重要性是基于最近的文献报道西班牙裔人口是美国最快的少数群体。在美国，西班牙裔人口约有60%是墨西哥人。墨西哥裔美国人有几个癌症风险因素的高患病率，包括超重/肥胖，糖尿病和代谢综合征（10，11），如果这些可改变的 尽管风险因素继续呈上升趋势，但据估计，在未来10年内，被诊断患有癌症的墨西哥裔美国人的人数可能会增加。向墨西哥裔美国人宣传和教育他们在科学研究进展中的重要作用，同时不损害他们的病人权利和隐私， 参与生物库的好处是有保证的。以利他主义的形式捐赠生物样本的动机可能是墨西哥裔美国人追求的教育工具。

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 early 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 patients 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) of the NCI established the The NCI Geographic Management Program (BMaP) to ensure the adequate and continuous supply of high-quality human biospecimens from mult-ethnic communities for cancer research (8). In addition, 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 collection 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 variations may influence participation decisions. We propose to use both quantitative and qualitative methods to determine factors that influenced 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 participation 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 population 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 overweight/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 educational tool to be pursued among Mexican-Americans.