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

在一些滥用之后，美国科学家越来越意识到公众对研究参与的不信任，最明显的是塔斯基吉研究未能适当地告知非洲裔美国男性梅毒患者并为其提供治疗。本项目将评估“塔斯基吉效应”对非裔美国人和欧裔美国人父母和青年在社会科学研究和相关伦理问题上的态度的强度和影响。该项目的一个主要目标是，通过收集信息来提高社会对科学事业的信任，这些信息可以改进对有危害健康行为、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。双管齐下的方法将借鉴社区观点，并结合定性和定量技术，以记录不同族裔群体的共同和独特的伦理态度。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方面的看法：(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，以及(b)对要求和放弃监护人同意的不同伦理争论的态度。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中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，社区投入焦点小组将确保在项目的定性部分提出的问题反映社区关注的问题，定量工具的术语和格式对参与者是适当的，从研究中得出的结论在文化上是有效的。项目结果将通过学术出版物、与内部审查委员会成员的会议以及向科学家以及非洲和欧洲裔美国人社区成员发送的通讯来传播。第二年年底，在福特汉姆大学举行的社区论坛将邀请最初的参与者、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，讨论如何改善科学伦理实践，以及如何提高少数民族对社会科学研究的兴趣和对其前景和风险的敏感性。这个社区论坛将为非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，让他们与发展科学家合作，为社会科学研究制定具有社会意义和道德责任的指导方针。它将作为少数民族青少年风险研究知情同意程序指南的基础，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.