Mays Vickie M
Professor of Psychology and Health Services, Director, UCLA Center on Bridging Research, Innovation, Training and Education for Minority Health Disparities Solutions.
Ethics Behav. 2012 Nov 1;22(6):411-418. doi: 10.1080/10508422.2012.730808.
This special issue addresses the legacy of the United States Public Health Service Syphilis Study on health reform, particularly the Affordable Care Act (ACA). The 12 manuscripts cover the history and current practices of ethical abuses affecting American Indians, Latinos, Asian Americans and African Americans in the United States and in one case, internationally. Commentaries and essays include the voice of a daughter of one of the study participants in which we learn of the stigma and maltreatment some of the families experienced and how the study has impacted generations within the families. Consideration is given in one essay to utilizing narrative storytelling with the families to help promote healing. This article provides the reader a roadmap to the themes that emerged from the collection of articles. These themes include population versus individual consent issues, need for better government oversight in research and health care, the need for overhauling our bioethics training to develop a population level, culturally driven approach to research bioethics. The articles challenge and inform us that some of our assumptions about how the consent process best works to protect racial/ethnic minorities may be merely assumptions and not proven facts. Articles challenge the belief that low participation rates seen in biomedical studies have resulted from the legacy of the USPHS Syphilis Study rather than a confluence of factors rooted in racism, bias and negative treatment. Articles in this special issue challenge the "cultural paranoia" of mistrust and provide insights into how the distrust may serve to lengthen rather than shorten the lives of racial/ethnic minorities who have been used as guinea pigs on more than one occasion. We hope that the guidance offered on the importance of developing a new framework to bioethics can be integrated into the foundation of health care reform.
本期特刊探讨了美国公共卫生署梅毒研究对医疗改革的影响，尤其是《平价医疗法案》（ACA）。这12篇稿件涵盖了在美国以及一个国际案例中，影响美国印第安人、拉丁裔、亚裔美国人和非裔美国人的道德滥用历史及当前做法。评论文章包括了一名研究参与者女儿的声音，从中我们了解到一些家庭所经历的耻辱和虐待，以及该研究如何影响了这些家庭中的几代人。其中一篇文章考虑了利用与这些家庭的叙事性故事讲述来帮助促进康复。本文为读者提供了一份从这些文章集合中浮现出的主题路线图。这些主题包括群体同意与个人同意问题、在研究和医疗保健中加强政府监督的必要性、彻底改革我们的生物伦理培训以发展一种基于群体层面、受文化驱动的研究生物伦理方法的必要性。这些文章向我们提出挑战并告知我们，一些关于同意过程如何最有效地保护种族/族裔少数群体的假设可能仅仅是假设，而非已证实的事实。文章对那种认为生物医学研究中低参与率是由美国公共卫生署梅毒研究的遗留影响，而非源于种族主义、偏见和负面待遇等多种因素共同作用的观点提出了质疑。本期特刊中的文章对不信任的“文化偏执”提出了挑战，并深入探讨了这种不信任如何可能延长而非缩短那些不止一次被当作实验对象的种族/族裔少数群体的寿命。我们希望关于建立生物伦理新框架重要性的指导意见能够融入医疗改革的基础之中。
