Minority Perspectives on Attitudes Toward Informed Consent Procedures for Adolescent Risk Research

美国科学家越来越意识到公众对研究参与的不信任，尤其是塔斯基吉研究，该研究未能为患有梅毒的非洲裔美国人提供适当的信息和治疗。该项目将评估“塔斯基吉效应”对非洲裔美国人和欧洲裔美国人父母和青年对社会科学研究和相关伦理问题的态度的影响。该项目的一个主要目标是通过收集信息来提高社区对科学企业的信任，这些信息可以改善对有健康危害行为，青少年犯罪和学业失败风险的青少年进行研究的知情同意方法。一个双管齐下的方法将借鉴社区的观点，并纳入定性和定量的技术，可以记录不同族裔群体的道德态度的共同和独特的方面。最终，它将以改善道德程序的方式赋予个人权力。将通过焦点小组收集定性数据，了解父母和青少年对以下问题的看法：（a）对社会科学研究的信任和怀疑;（B）青少年风险研究对个人和社区的感知价值和潜在成本;（B）对要求和放弃监护人同意的不同伦理论点的态度。 在定性数据的基础上，PI将创建文化上有效的问卷，以量化父母和青少年对青少年风险研究知情同意程序中伦理问题的反应的重要方面。在项目开始和整个过程中，社区投入的焦点小组将确保项目质量部分提出的问题反映社区的关切，数量工具的术语和格式适合参与者，从研究中得出的结论在文化上是有效的。项目成果将通过学术出版物、与IRB成员的会议以及发给科学家和非洲及欧洲裔美国人社区成员的通讯进行传播。在第二年年底，在福德姆大学举行的社区论坛将吸引原始参与者，他们的社区领袖和来自不同种族背景的学者进行公开对话，讨论如何提高科学实践中的伦理道德，以及如何提高少数民族对社会科学研究的兴趣和对其承诺和风险的敏感性。社区论坛将为非洲裔美国人和欧洲裔美国人的神职人员、教师、家长和青年提供一个机会，与发展科学家合作，为社会科学研究制定有社会意义和道德责任的指导方针。它将为少数民族青少年风险研究的知情同意程序指南提供基础，该指南将分发给发展科学家，IRB成员，少数民族学者和社区成员。

US scientists are increasingly aware of public distrust about research participation following some abuses, most notably the Tuskegee study which failed to appropriately inform and provide treatment for African American men with syphilis. This project will assess the strength and impact of the `Tuskegee effect` on the attitudes of African American and European American parents and youth regarding social science research and associated ethical issues. A major goal of this project is to enhance community trust in the scientific enterprise by gathering information that can improve approaches to informed consent for research conducted with adolescents at-risk for health compromising behaviors, juvenile delinquency, and academic failure. A two-pronged methodology will draw upon community perspectives and incorporate both qualitative and quantitative techniques that can document common and unique dimensions of ethical attitudes in different ethnic groups. Ultimately it will empower individuals in ways that improve ethical procedures. Qualitative data will be collected through focus groups on parents' and adolescents' opinions on (a) trust and suspicion of social science research; (b) the perceived value and potential cost of adolescent risk research to individuals and communities, and (b) attitudes toward different ethical arguments on requiring and waiving guardian consent. Building on the qualitative data, the PI will create culturally valid questionnaires to quantify significant aspects of parent and adolescent responses to ethical issues in informed consent procedures for adolescent risk research. Focus groups for community input at the outset and throughout the project will insure that the issues raised in the qualitative portion of the project reflect community concerns, that the terminology and format of the quantitative instruments are appropriate for the participants, and that conclusions drawn from the study are culturally valid. Project results will be disseminated through scholarly publications, meetings with IRB members, and newsletters reaching both scientists and African and European American community members. At the end of the second year a Community Forum held at Fordham University will engage the original participants, their community leaders, and scholars from diverse ethnic backgrounds in open dialogue about how to improve ethics-in-science practices and how to increase ethnic minority interest in social science research and sensitivity to both its promise and risks. The community forum will provide an opportunity for African American and European American clergy, teachers, parents and youth to work in partnership with developmental scientists to create socially meaningful and ethically responsible guidelines for social science research. It will provide the basis of a Guidebook for Informed Consent Procedures for Ethnic Minority Adolescent Risk Research to be distributed to developmental scientists, IRB members, ethnic minority scholars, and community members.