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） 自闭症谱系障碍（ASD）的病因学研究越来越多地集中在复杂的遗传和环境机制。 目前正在进行的主要新举措的结果，包括EARLI网络正在进行的工作，EARLI网络是一项专门用于调查ASD环境和遗传风险因素的多站点流行病学研究，有可能丰富我们对ASD病因的理解。 鉴于公众对ASD病因的激烈辩论，与其病因相关的科学发现的交流存在重大困难，需要敏感性。 由于沟通复杂的环境和遗传风险可能会出现与ASD潜在相关的挑战，因此会出现进一步的困难。 这种复杂性要求理解与自闭症科学发现相关的伦理含义。 然而，这些问题很少受到关注。 为了解决这一缺陷，研究人员提议召开为期两天的ASD主要利益相关者会议（包括科学家，临床医生，生物伦理学家，遗传咨询师，科学记者，父母和患者倡导团体，教育工作者，干预者和社区卫生工作者）。 会议有三个目的：（1）审查自闭症研究及其传播所涉及的伦理问题;（2）通过提出具体的指导方针或政策建议，弥合生物伦理与研究和传播实践之间的差距;并且，在本发明中，第三章建立新的伙伴关系，让不同的社区团体和利益攸关方参与这项活动，以促进负责任地传播新出现的知识，临床医生，遗传咨询师，记者，父母和病人，等等。为筹备讲习班，该领域的专家将制定若干“新发现”设想方案，并分发给与会者，以促进讲习班期间的初步讨论。 将编制一份关于讲习班主要结论的“白色文件”供出版，并将建立一个网站，作为传播这些结论和建立 这是一个平台，今后可能扩大为关于这些问题的持续互动论坛。 调查人员还建议将研讨会的会议记录编辑成一卷，他们希望由学术出版社出版。 该研讨会将成为促进自闭症研究利益攸关方之间合作的里程碑，并有助于制定战略，确保向公众传播研究成果。