Ethics of Communicating Scientific Findings on Autism Risk

传播自闭症风险科学发现的伦理

• 批准号: 7677590
• 负责人: Craig J Newschaffer
• 金额: $ 2.5万
• 依托单位: DREXEL UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2009
• 资助国家: 美国
• 起止时间: 2009-04-01 至 2010-03-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/7677590
• 关键词: Address; Area; Attention; Autistic Disorder; Bioethics; Bioethics Consultants; Communication; Communication Research; Community Health; Complex; Educational workshop; Epidemiologic Studies; Ethical Issues; Ethics; Etiology; Future; General Population; Genetic; Genetic Risk; Guidelines; Knowledge; Paper; Parents; Participant; Patients; Policies; Preparation; Professional counselor; Publications; Publishing; Research; Research Design; Research Personnel; Risk; Science; Scientist; Site; Work; autism spectrum disorder; community setting; gene environment interaction; genetic risk factor; meetings; patient advocacy group; web site

DESCRIPTION (provided by applicant) Research on the etiology of autism spectrum disorder (ASD) is increasingly focused on complex genetic and environmental mechanisms. Findings from major new initiatives now underway, including work being done by the EARLI Network, a multi-site epidemiologic study designed specifically to investigate environmental and genetic risk factors for ASD, have the potential to enrich our understanding of the etiology of ASD. Given the intensity of public debate about causes for ASD, the communication of scientific findings relating to its etiology presents significant difficulties and demands sensitivity. Further difficulties will arise because of the challenges involved in communicating complex environmental and genetic risks likely to emerge as being potentially associated with ASD. This complexity demands an understanding of the ethical implications associated with scientific findings on autism. However, little attention has been given to these issues. To address this shortcoming, the investigators propose a two-day meeting of leading ASD stakeholders (including scientists, clinicians, bioethicists, genetic counselors, science journalists, parent and patient advocacy groups, educators, interventionists, and community health workers). The purpose of the meeting would be threefold: 1) to examine the ethical issues involved in ASD research and its dissemination; 2) to bridge the gaps between bioethics and research and communication practices by recommending specific guidelines or policy proposals; and, 3) to build new partnerships by including a diverse set of community groups and stakeholders in this activity in order to facilitate the responsible dissemination of emerging knowledge to clinicians, genetic counselors, journalists, parents, and patients, among others. In preparation for the workshop, several "new discovery" scenarios will be developed by experts in the field and circulated to participants to promote initial discussions during the course of the workshop. A "white paper" of key workshop findings will be produced for publication and a website will be established as a means of both disseminating these findings and establishing as a platform for potential future expansion into an ongoing interactive forum on these issues. The investigators also propose editing workshop proceedings into a volume that they hope to have published by an academic press. This workshop would be a landmark in promoting cooperation among stakeholders in autism research, and assist in developing strategies to insure the communication of research findings to the general public.

描述（由申请人提供） 关于自闭症谱系障碍（ASD）病因的研究越来越集中于复杂的遗传和环境机制。 目前正在进行的主要新计划的发现，包括由Earli Network完成的工作，Earli Network是一项专门研究ASD的环境和遗传危险因素的多站点流行病学研究，具有丰富我们对ASD病因的理解。 鉴于关于ASD原因的公众辩论的强度，与其病因有关的科学发现的交流带来了巨大的困难和需求敏感性。 将出现进一步的困难，这是由于传播可能与ASD相关的复杂环境和遗传风险所带来的挑战。 这种复杂性需要了解与自闭症科学发现相关的道德意义。 但是，对这些问题的关注很少。 为了解决这一缺点，调查人员提出了为期两天的ASD利益相关者（包括科学家，临床医生，生物伦理学家，遗传辅导员，科学记者，父母和患者倡导组织，教育工作者，干预主义者和社区卫生工作者）举行的为期两天的会议。 会议的目的是三重：1）检查ASD研究及其传播所涉及的道德问题； 2）通过建议特定的准则或政策建议，弥合生物伦理学与研究和传播实践之间的差距； 3）在这项活动中包括各种各样的社区团体和利益相关者，以促进向临床医生，遗传顾问，记者，父母和患者等负责传播新兴知识，以建立新的伙伴关系。为了准备研讨会，该领域的专家将开发几种“新发现”场景，并散发给参与者，以在研讨会过程中促进初步讨论。 将制定一个关键研讨会发现的“白皮书”，以供出版，并将建立一个网站，以既是传播这些发现并确定为 一个将来将来扩展到正在进行的互动论坛上的平台。 调查人员还建议将研讨会程序编辑为他们希望在学术媒体上发表的卷。 该研讨会将是促进自闭症研究中利益相关者之间合作的地标，并协助制定战略以确保将研究结果传达给公众。