Pilot Project

生物样本收集的做法并不新鲜；然而，美国国家癌症研究所(NCI)最近做出了广泛努力，制定了改进生物样本和生物库数据质量的指南(1)。不仅在癌症研究人员中，而且在患者中，对生物储存库和生物标本收集科学的兴趣仍在增长(2)。最近，Ambrosone et al.报告概述了建立生物储存库的必要程序(3)。生物信息库在癌症中扮演着重要的角色 作为生物标记物的研究被储存起来，然后用于调查癌症的病因、进展和预后，以及开发用于早期检测的生物标记物。尽管开发生物信息库基础设施的概念和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，但生物信息库的研究人员几乎没有做出什么努力来告知或教育 普通人群对生物库中正在进行的研究以及生物检疫剂对癌症研究的重要性的了解(4)。提供透明的交流和教育对于应对许多人历史上对研究人员/机构缺乏信任、导致参与生物库的同意选择减少的情况很重要(4、5)。对研究界和医疗保健系统的不信任 在非洲裔美国人中有记载(6)；然而，在包括西班牙裔美国人在内的其他种族群体中，对这些问题知之甚少。 解决生物银行的伦理问题的重要性给了美国不同人群的重要性和考虑。在收集用于生物库和开发生物库的生物标本之前，应该考虑几个伦理和法律问题，这些问题应该向患者、临床医生和科学家开放。一个主要的伦理问题是认识到情侣的需要 永远必须排在第一位(7)。尽管保持科学进步很重要，但研究人员必须致力于在保护患者和研究进步之间取得平衡。在美国，受教育程度低和其他几个医疗保健劣势的少数群体对患者的权利和利益知之甚少 生物库。NCI减少癌症健康差异中心(CRCHD)建立了NCI地理管理计划(BMAP)，以确保来自多种族社区的高质量人类生物标本的充足和持续供应，用于癌症研究(8)。此外，BMAP还考虑到特定地区不同社区的文化敏感性。相似和共享共同 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)能够共享数据和知识，改变了生物库的概念。然而，确定激励人们参与生物库生物标本收集的因素仍然没有得到很好的探索。 这项先导性研究的目的是描述影响墨西哥裔美国人决定在三个队列中提供生物标本用于生物库或血液采集的社会人口、文化适应和心理社会因素：德克萨斯州布朗斯维尔的哈里斯县的Mano A Mano-墨西哥-美国队列研究，Salud Para Su Corazon和CCHC，德克萨斯州布朗斯维尔。此外，由于在各个队列中存在差异， 在提供样本之后，我们将有机会探讨这些变化如何影响参与决定。我们建议使用定量和定性的方法来确定影响在休斯顿、埃尔帕索和布朗斯维尔进行大量人口和社区研究的参与者中捐赠生物样本的决定的因素。我们进一步建议探索可能影响的因素 在居住在德克萨斯州和墨西哥边境(埃尔帕索和布朗斯维尔)的墨西哥裔美国人中参与生物库活动。 描述和了解在拉美裔癌症研究中影响生物库捐赠的社会人口学和文化适应因素的重要性是基于最近的文献报道，拉美裔人口是美国人口最快的少数群体。在美国，拉美裔人口中约60%有墨西哥血统。墨西哥裔美国人有几种癌症风险因素的高患病率，包括肥胖、糖尿病和代谢综合征(10，11)，如果这些因素是可改变的 风险因素继续呈上升趋势，据估计，在未来10年，墨西哥裔美国人被诊断为癌症的人数可能会增加。告知和教育墨西哥裔美国人他们在科学研究进展中的重要作用，但不包括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以成为墨西哥裔美国人追求的一种教育工具。

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 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.