Laying Anchor: Inserting Precision Health into a Public Health Genetics Policy Course.
Laying Anchor: Inserting Precision Health into a Public Health Genetics Policy Course.
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DOI：
10.3390/healthcare6030093
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发表时间：
2018-08-03
期刊：
影响因子：
--
通讯作者：
Kardia SLR
中科院分区：
文献类型：
--
作者：
Modell SM;Citrin T;Kardia SLR
美国精准医学计划 (PMI) 由时任总统巴拉克·奥巴马 (Barack Obama) 于 2015 年 1 月宣布。这是一项全国性的努力，旨在考虑遗传、环境和生活方式的差异，开发个性化的治疗和预防形式。这一目标于 2015 年 3 月实施，成立了一个咨询委员会工作组，为拟议的 100 万或更多参与者的国家研究队列提供框架。该工作组还举办了关于参与者参与和健康公平的公共研讨会，重点关注包容性队列的设计、建立公众信任以及确定全国队列的积极参与者参与特征。精密技术为医疗和公共卫生从业者提供了基于应用于大量基因型和表型数据的信息学来个性化定制预防和治疗方案的机会。 PMI（全民研究计划）的医疗和公共卫生承诺、对技术和伦理问题的平衡关注以及细致入微的咨询结构使其成为密歇根大学公共卫生学院每年秋季开设的课程“公共卫生遗传学问题”(HMP 517) 的自然选择。 2015 年，教师将 PMI 作为在课程开始时介绍并在整个课程中提及的经常性案例研究，并作为课堂练习，让学生将问题转化为政策。 2016年，整个班级的课程都致力于精准医学和精准公共卫生。在本文中，我们研究了这三个课程组成部分中发生的对话，评估课程对学生制定 PMI 政策能力的影响，并分享我们对涉及精准健康的下一代课程的愿景。方法：对三个课程组成部分的课堂材料（课堂笔记、口语练习笔录、课堂练习书面交作业）进行检查和分析，以了解问题和政策内容。分析的目的是评估课程组成部分在多大程度上使我们的学生能够制定精准公共卫生领域的政策。对初始案例研究期间提出的问题的学生评论的分析包括初始或“前”类别。对学生对课堂练习作业的反应进行分析，其中包括同一组问题，形成“后”类别。通过三位作者之间的交叉比较来验证类别，并检查它们在学生回答中出现的频率。频率决定了说明性引文的选择，揭示了学生能够将问题领域转化为实际政策的程度。检查精确健康教学课程中的讲座内容和学生评论，以了解它们强化和扩展派生类别的程度。结果：案例研究检查得出了四个总体类别：（1）保证（准入、公平、差异）； （2）参与（参与性、代表性）； (3) 道德（同意、隐私、利益分享）； (4) 人的待遇（污名化、歧视）。班级练习检查和分析产生了另外三个类别：（5）财务； (6) 教育； (7) 建立信任。前三个类别在学生提及次数方面超过了其他类别（8-14 次与 4-6 次提及）。由于很少提及，其他三个类别也被考虑并排除。学生们提出了几种建立信任的方法，包括 PMI 人员与社区领袖合作、利益相关者咨询、建立网络和使用社交媒体。学生代表优先考虑参与者和研究机构对 PMI 信息的访问，而不是商业访问。提出了多种方案以征求参与者的同意和返回结果。定价政策和医疗补助覆盖范围都被提及。在教学过程中，学生们评论了精准健康领域提供者培训的重要性。课程评估强调需要明确参与 PMI 的组织，并留出时间进行学生与学生的互动。结论：虽然一些学生在练习中的反应很简洁，但在学生提出具体政策和实施步骤的能力方面，三个课程组成部分的进展是明显的。学生们在向同行听众展示政策立场时也获得了自信。学生们提出了一些非常有创意的建议，例如使用电子平台来确保参与者参与其生物样本和个人健康信息的处理，以及管理大量数据的替代方法示例。对社会伦理问题和政策的审查可以加强学生对精准医学计划所采取方向的理解，并有助于培训更多样的精准医学和公共卫生技术的应用，例如一级基因检测以及全基因组和外显子组测序。未来的课程开发可能会反映正在进行的“我们所有人研究计划”的其他特征，并进一步阐明适用于人群而不是个人的精确公共卫生方法。
The United States Precision Medicine Initiative (PMI) was announced by then President Barack Obama in January 2015. It is a national effort designed to take into account genetic, environmental, and lifestyle differences in the development of individually tailored forms of treatment and prevention. This goal was implemented in March 2015 with the formation of an advisory committee working group to provide a framework for the proposed national research cohort of one million or more participants. The working group further held a public workshop on participant engagement and health equity, focusing on the design of an inclusive cohort, building public trust, and identifying active participant engagement features for the national cohort. Precision techniques offer medical and public health practitioners the opportunity to personally tailor preventive and therapeutic regimens based on informatics applied to large volume genotypic and phenotypic data. The PMI’s (All of Us Research Program’s) medical and public health promise, its balanced attention to technical and ethical issues, and its nuanced advisory structure made it a natural choice for inclusion in the University of Michigan course “Issues in Public Health Genetics” (HMP 517), offered each fall by the University’s School of Public Health. In 2015, the instructors included the PMI as the recurrent case study introduced at the beginning and referred to throughout the course, and as a class exercise allowing students to translate issues into policy. In 2016, an entire class session was devoted to precision medicine and precision public health. In this article, we examine the dialogues that transpired in these three course components, evaluate session impact on student ability to formulate PMI policy, and share our vision for next-generation courses dealing with precision health. Methodology: Class materials (class notes, oral exercise transcripts, class exercise written hand-ins) from the three course components were inspected and analyzed for issues and policy content. The purpose of the analysis was to assess the extent to which course components have enabled our students to formulate policy in the precision public health area. Analysis of student comments responding to questions posed during the initial case study comprised the initial or “pre-” categories. Analysis of student responses to the class exercise assignment, which included the same set of questions, formed the “post-” categories. Categories were validated by cross-comparison among the three authors, and inspected for frequency with which they appeared in student responses. Frequencies steered the selection of illustrative quotations, revealing the extent to which students were able to convert issue areas into actual policies. Lecture content and student comments in the precision health didactic session were inspected for degree to which they reinforced and extended the derived categories. Results: The case study inspection yielded four overarching categories: (1) assurance (access, equity, disparities); (2) participation (involvement, representativeness); (3) ethics (consent, privacy, benefit sharing); and (4) treatment of people (stigmatization, discrimination). Class exercise inspection and analysis yielded three additional categories: (5) financial; (6) educational; and (7) trust-building. The first three categories exceeded the others in terms of number of student mentions (8–14 vs. 4–6 mentions). Three other categories were considered and excluded because of infrequent mention. Students suggested several means of trust-building, including PMI personnel working with community leaders, stakeholder consultation, networking, and use of social media. Student representatives prioritized participant and research institution access to PMI information over commercial access. Multiple schemes were proposed for participant consent and return of results. Both pricing policy and Medicaid coverage were touched on. During the didactic session, students commented on the importance of provider training in precision health. Course evaluation highlighted the need for clarity on the organizations involved in the PMI, and leaving time for student-student interaction. Conclusions: While some student responses during the exercise were terse, an evolution was detectable over the three course components in student ability to suggest tangible policies and steps for implementation. Students also gained surety in presenting policy positions to a peer audience. Students came up with some very creative suggestions, such as use of an electronic platform to assure participant involvement in the disposition of their biological sample and personal health information, and alternate examples of ways to manage large volumes of data. An examination of socio-ethical issues and policies can strengthen student understanding of the directions the Precision Medicine Initiative is taking, and aid in training for the application of more varied precision medicine and public health techniques, such as tier 1 genetic testing and whole genome and exome sequencing. Future course development may reflect additional features of the ongoing All of Us Research Program, and further articulate precision public health approaches applying to populations as opposed to single individuals.
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影响因子：
2.7
作者：
Linderman MD;Sanderson SC;Bashir A;Diaz GA;Kasarskis A;Zinberg R;Mahajan M;Suckiel SA;Zweig M;Schadt EE
通讯作者：
Schadt EE
DOI：
10.1038/gim.2013.73
发表时间：
2013-07
期刊：
Genetics in medicine : official journal of the American College of Medical Genetics
影响因子：
--
作者：
通讯作者：
--
DOI：
10.1146/annurev-genom-090314-024956
发表时间：
2016-08-31
影响因子：
8.7
作者：
Denny JC;Bastarache L;Roden DM
通讯作者：
Roden DM
DOI：
10.1038/gim.2017.211
发表时间：
2018-06
期刊：
Genetics in medicine : official journal of the American College of Medical Genetics
影响因子：
--
作者：
Khoury MJ;Bowen MS;Clyne M;Dotson WD;Gwinn ML;Green RF;Kolor K;Rodriguez JL;Wulf A;Yu W
通讯作者：
Yu W
影响因子：
3.3
作者：
Gutmann, A;Thompson, D
通讯作者：
Thompson, D