Understanding the Relationships between Race, Ethnicity, Ancestry and Genomics

了解种族、民族、血统和基因组之间的关系

• 批准号: 7594333
• 负责人: Colleen McBride
• 金额: $ 58.15万
• 依托单位: NATIONAL HUMAN GENOME RESEARCH INSTITUTE
• 依托单位国家: 美国
• 资助国家: 美国
• 起止时间: 至
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/7594333
• 关键词: Address; Age; Belief; Clinical; Cognitive; Communities; Conceptions; Conflict (Psychology); Counseling; Data; Data Collection; Decision Making; Development; Empirical Research; Environment; Ethnic Origin; Family Physicians; Female; Focus Groups; Future; Gap Junctions; Gender; Genetic; Genetic Identity; Genetic Risk; Genetic Screening; Genetic Variation; Genetic screening method; Genomics; Health; Health Professional; Hereditary Disease; Human Development; Human Genetics; Human Genome; Individual; Internet; Interview; Knowledge; Manuscripts; Measures; Medical Education; Medical Records; Medicine; Nexus (resin cement); Online Systems; Outcome; Participant; Patients; Physicians; Primary Care Physician; Prostate-Specific Antigen; Public Health; Publications; Qualitative Methods; Race; Randomized; Rate; Reporting; Research; Research Personnel; Role; Science Policy; Screening procedure; Sex Characteristics; Surveys; Thinking; Work; base; experience; health disparity; heuristics; insight; instrument; posters; programs; racial and ethnic; racial/ethnic difference; usability

This project examines patients and health professionals understanding of the relationships between race, ethnicity and genetics. The project utilizes three broad approaches to address these issues: (1) development of a scale to assess individuals understanding of race, ethnicity and genetics; and (2) qualitative and quantitative data collection to understand the current beliefs, use and knowledge of the relationships between race, ethnicity, ancestry, identity and genetics; and (3) development of a theoretical framework for science policy and medical education on race, ethnicity, ancestry and genetics. For Aim 1, three empirical sub-projects were conducted which have informed the development of a conceptual framework we are using to guide development of the HGVB (see poster 8). Two of these projects used data from the AAFP web-based survey of 1035 family physicians to analyze physicians views on race and genetics. As part of the survey, we randomized family physicians to see a hypothetical black or white female patient, age 36 who was seeking pre-conception counseling. We found that only 31% of all physicians would offer pre-conception genetic screening. Interestingly, physicians who saw a black patient were more likely to offer screening (35%) than physicians who saw the white patient (26%) (p<0.01). This suggests that in addition to other well-documented occurrences of clinicians use of heuristics or patient profiling in their clinical decision-making, they are likely to do the same with genetic testing. In a manuscript recently accepted for publication in Community Genetics, we report other results from the AAFP survey related to physicians attributions for health disparities. We found that when family physicians were presented with two scenarios for health disparities (one related to gender, and one for race/ethnicity), they were significantly more likely to attribute racial/ethnic differences in health outcomes to the environment than to gender differences (4.6 vs. 3.6 (p<.001). Physicians also rated race/ethnicity and gender as equally important in their clinical decision-making (4.4 and 4.6, respectively). We conclude in this manuscript that while family physicians do not think racial and ethnic health disparities are genetically predetermined, they do have beliefs about how race and ethnicity influences their patients health. In the third sub-project of Aim 1, we conducted 22 interviews with multiracial patients to characterize their beliefs and knowledge about genetic variation and their experiences with race in their clinical encounters. The majority of participants felt that their race was commonly assumed to be black and they noted that this assumption was often transferred to their medical records. These projects are guiding my exploration of the factors within the conceptual framework. For Aim 2, we have completed 10 focus groups. We found that both black and white physicians concluded that the race of the patient is medically relevant in clinical practice. Some physicians reported that it was important in providing insights into a patients culture others stated it informs screening decisions (e.g. prostate-specific antigen). They offered conflicting views on the degree of relevance and the specific role of race in clinical decision-making. They were reticent to make connections among race, genetics, and disease. Taken together, the above results of this program of research suggest that the use of race and genetics in clinical decision-making is not well understood. Based on this body of work, we have developed a preliminary version of the Human Genetic Variation Beliefs Scale (HGVB). With respect to Aim 3, we have conducted 32 cognitive interviews and held two expert advisory panels to provide guidance in scale refinement and web usability of the instrument.

该项目检查了患者和卫生专业人员对种族，民族和遗传学之间关系的理解。 该项目采用三种广泛的方法来解决这些问题：（1）制定一个量表，评估个人对种族、族裔和遗传学的理解;（2）收集定性和定量数据，以了解目前对种族、族裔、血统、身份和遗传学之间关系的信念、使用和知识;以及（3）为关于种族、民族、血统和遗传学的科学政策和医学教育制定理论框架。 对于目标1，开展了三个实证子项目，为我们用于指导HGVB开发的概念框架的开发提供了信息（见海报8）。 其中两个项目使用了AAFP对1035名家庭医生进行的基于网络的调查数据，以分析医生对种族和遗传学的看法。作为调查的一部分，我们随机选择了家庭医生，让他们去看一个假设的黑人或白色女性患者，年龄36岁，正在寻求孕前咨询。 我们发现，只有31%的医生会提供孕前遗传筛查。 有趣的是，看过黑人病人的医生（35%）比看过白色病人的医生（26%）更有可能提供筛查（p<0.01）。 这表明，除了临床医生在临床决策中使用药物学或患者分析的其他有据可查的事件外，他们可能会对基因检测做同样的事情。 在最近接受发表在《社区遗传学》上的一篇手稿中，我们报告了来自AAFP调查的其他结果，这些结果与医生对健康差异的归因有关。 我们发现，当家庭医生面临两种健康差异的情景时（一种与性别有关，另一种与种族/民族有关），他们更有可能将健康结果中的种族/民族差异归因于环境，而不是性别差异（4.6 vs. 3.6（p<.001））。 医生还将种族/民族和性别评定为在其临床决策中同等重要（分别为4.4和4.6）。 我们的结论是，虽然家庭医生不认为种族和民族的健康差异是遗传预定的，他们确实有关于种族和民族如何影响他们的病人的健康的信念。 在目标1的第三个子项目中，我们对多种族患者进行了22次访谈，以描述他们对遗传变异的信念和知识以及他们在临床遇到的种族经历。大多数参与者认为，他们的种族通常被认为是黑人，他们指出，这种假设往往被转移到他们的医疗记录。 这些项目正在指导我对概念框架内的因素的探索。 就目标2而言，我们已完成了10个焦点小组。 我们发现，黑人和白色医生都认为，患者的种族在临床实践中具有医学相关性。 一些医生报告说，它在提供对患者文化的见解方面很重要，其他人则表示它为筛选决策提供了信息（例如前列腺特异性抗原）。 他们对种族在临床决策中的相关程度和具体作用提出了相互矛盾的观点。他们不愿将种族、遗传和疾病联系起来。 综上所述，本研究项目的上述结果表明，种族和遗传学在临床决策中的应用还没有得到很好的理解。 在此基础上，我们开发了人类遗传变异信念量表（HGVB）的初步版本。 关于目标3，我们进行了32次认知访谈，并举行了两次专家咨询小组会议，为量表的改进和网络可用性提供指导。