Genome Diner: A strategy for community-researcher engagement in genome sciences

基因组晚餐：社区研究人员参与基因组科学的策略

• 批准号: 7690940
• 负责人: Susanne B Haga
• 金额: $ 3.85万
• 依托单位: DUKE UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2008
• 资助国家: 美国
• 起止时间: 2008-09-24 至 2010-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/7690940
• 关键词: Address; Adult; Attitude; Awareness; Benefits and Risks; Biological Sciences; Biomedical Research; Communication; Communities; Data; Decision Making; Development; Education; Educational Curriculum; Effectiveness; Ensure; Evaluation; Family; Family member; Future; General Population; Genetic; Genome; Genomics; Health Services Research; Institutes; Intervention; Museums; North Carolina; Outcome; Parents; Participant; Perception; Population Study; Public Health; Public Participation; Reporting; Research; Research Personnel; Resources; Schools; Science; Science Policy; Scientist; Series; Shapes; Side; Students; Surveys; Technology; Testing; Training; Trust; Universities; clinical application; community setting; design; follow-up; interest; meetings; middle school; programs; social implication; success; uptake

DESCRIPTION (provided by applicant): As evidenced by the endless reports of new discoveries in genetics and genomics over the past few decades, the public's views will substantially influence the uptake and use of these new applications for personal and societal benefit. Informed decision-making regarding the use of genomic applications will depend on public understanding of both basic scientific concepts and social implications to enable consideration of personally significant risks and benefits. Furthermore, informed publics are critical for the large population studies often required in genome sciences. A major player in public understanding and perception of science are researchers. By exploring public understanding and views of genome science research and technology, genome researchers will be better able to shape their messages and address public concerns, thereby building trust between the two groups. To meet this challenge, we are proposing a mixed strategy of researcher-community engagement through a partnership between the Duke Institute for Genome Sciences & Policy and the Museum of Life and Science in Durham, North Carolina. Utilizing a community forum approach, we will convene a series of forums by inviting students and adult family members from the 7th grade class of a local public middle school. Through a program of moderated small group discussion, we aim to engage the families in thoughtful dialogue alongside university researchers who have attended special training sessions in science communication and community partnership. Focusing on issues in genome sciences, we will evaluate the impact and feasibility of this approach for education and engagement of diverse publics regarding basic and biomedical research within the community setting. Using a series of pre-, post- and follow-up surveys, we will assess the impact of researcher training and community-researcher engagement on: (1) community perceptions/attitudes towards research and researchers, (2) community awareness of and interest in genome science research, (3) community ability to seek and interpret research data and genome science messages through public resources, (4) researcher awareness of community understanding and perceptions, and (5) researcher participation in community science and research engagement programs and activities. The outcomes of the evaluation will help inform the development of future community- researcher partner programs and serve as a launching point for further exploration and analysis of public understanding and attitudes of genome science research and technologies as well as other basic and biomedical arenas. As genetics and genomics research and clinical applications relevant to public health continue to expand, the success of these endeavors will depend on the support and participation of the public. Public understanding of issues important in genomics research and clinical applications will be critical to ensure respect for and protection of future research participants and the safe and appropriate use of new tests and interventions. Efforts to engage and educate the public through direct interaction with scientists will be critical to the promotion of public awareness and informed public deliberation of genomics issues in research and healthcare.

描述（由申请人提供）：在过去的几十年里，关于遗传学和基因组学新发现的无休止的报道证明，公众的观点将极大地影响这些新应用的吸收和使用，以造福个人和社会。关于使用基因组应用的知情决策将取决于公众对基本科学概念和社会影响的理解，以便能够考虑个人重大风险和利益。此外，知情的公众对于基因组科学中经常需要的大规模人口研究至关重要。公众理解和感知科学的主要参与者是研究人员。通过探索公众对基因组科学研究和技术的理解和看法，基因组研究人员将能够更好地塑造他们的信息并解决公众的担忧，从而在两个群体之间建立信任。为了应对这一挑战，我们提议通过杜克基因组科学与政策研究所与北卡罗来纳州达勒姆的生命与科学博物馆之间的合作伙伴关系，提出一项研究人员与社区参与的混合战略。我们将利用社区论坛的方式，邀请当地一所公立中学七年级的学生和成年家庭成员，举办一系列论坛。通过一个有节制的小组讨论项目，我们的目标是让这些家庭与参加过科学传播和社区伙伴关系特别培训课程的大学研究人员进行深思熟虑的对话。以基因组科学问题为重点，我们将评估这种方法对社区环境中基础和生物医学研究的教育和不同公众参与的影响和可行性。通过一系列前期、后期和后续调查，我们将评估研究人员培训和社区研究人员参与对以下方面的影响：(1)社区对研究和研究人员的看法/态度，(2)社区对基因组科学研究的认识和兴趣，(3)社区通过公共资源寻求和解释研究数据和基因组科学信息的能力，(4)研究人员对社区理解和看法的认识，以及(5)研究人员参与社区科学和研究参与计划和活动。评估结果将有助于为未来社区-研究人员合作计划的发展提供信息，并作为进一步探索和分析公众对基因组科学研究和技术以及其他基础和生物医学领域的理解和态度的起点。随着与公共卫生有关的遗传学和基因组学研究和临床应用的不断扩大，这些努力的成功将取决于公众的支持和参与。公众对基因组学研究和临床应用中的重要问题的理解对于确保尊重和保护未来的研究参与者以及安全、适当地使用新的测试和干预措施至关重要。通过与科学家的直接互动来吸引和教育公众的努力对于促进公众对研究和医疗保健中的基因组学问题的认识和知情的公众审议至关重要。

项目成果

Strategies for Disseminating Information on Biomedical Research on Autism to Hispanic Parents.

向西班牙裔父母传播自闭症生物医学研究信息的策略。

• DOI: 10.1007/s10803-015-2649-5
• 发表时间: 2016
• 期刊: Journal of autism and developmental disorders
• 影响因子: 3.9
• 作者: Lajonchere,ClaraM;Wheeler,BarbaraY;Valente,ThomasW;Kreutzer,Cary;Munson,Aron;Narayanan,Shrikanth;Kazemzadeh,Abe;Cruz,Roxana;Martinez,Irene;Schrager,ShereeM;Schweitzer,Lisa;Chklovski,Tara;Hwang,Darryl
• 通讯作者: Hwang,Darryl

Promoting public awareness and engagement in genome sciences.

• DOI: 10.1007/s10897-013-9577-3
• 发表时间: 2013-08
• 期刊: JOURNAL OF GENETIC COUNSELING
• 影响因子: 1.9
• 作者: Haga, Susanne B.;Rosanbalm, Katie D.;Boles, Larry;Tindall, Genevieve M.;Livingston, Troy M.;O'Daniel, Julianne M.
• 通讯作者: O'Daniel, Julianne M.

Acetonitrile-dicarbon-yl(η-penta-methyl-cyclo-penta-dien-yl)iron(II) tetra-fluorido-borate.

乙腈二甲苯（ηpenta-甲基-Cyclo-penta-dien-yl）铁（II）TETRA-FLUORIDO-bITER。

• DOI: 10.1107/s1600536811021350
• 发表时间: 2011-07-01
• 期刊: Acta crystallographica. Section E, Structure reports online
• 作者: M'thiruaine CM;Friedrich HB;Changamu EO;Bala MD
• 通讯作者: Bala MD