为什么所有人——包括有色人种——参加临床研究是至关重要的
From clinical trials to studies in healthy volunteers, 没有选择参加临床研究的人的帮助，临床研究是不可能进行的. Not all people—including people of color, people with disabilities, and others — have been included as often as they should in studies. There are several reasons. 这可能是因为人们获得医疗保健的机会有限，也可能是因为研究设计的方式存在偏见. It could also be because some people did not trust researchers. To ensure everyone has the chance to be as healthy as possible, 参与医学研究的人群必须代表我们整个社会. Right now, it does not.
As an example. a 2020 report from the U.S. Food and Drug Administration showed:
-
75%
of research participants are white, while white people are 60% of people in the U.S.
-
8%
of research participants are African-American/Black, while African-American/Black people are 13% of people in the U.S.
-
11%
of research participants are Latino/Hispanic, while Latino/Hispanic people are 18% of people in the U.S.
-
6%
of research participants are Asian, while Asian Americans are 6% of people in the U.S.
Participation Promotes Medical Equity
Research participants are key to making medical progress. So is diversity among those participants.
To advance equity in health care, it is critical that all people, including people of color, participate in clinical research. The reasons include:
- Race, disability and socioeconomic status, 其他人口因素也会影响人们患上某些疾病的风险. 它还会影响他们对医疗干预的反应及其整体健康结果. 参与临床研究的参与者组成的群体越多样化, 研究结果——以及任何开始或停止临床治疗的决定——就越有可能适用于不同的患者群体.
- 重要的是，研究参与者代表了受所研究疾病或状况影响最大的人群. For example, 某些癌症和镰状细胞病在有色人种中更为常见, 这使得有色人种参与这些严重疾病的临床研究变得至关重要.
“We are all more similar than we are different, but there can be differences in how people process medicines,” says Namandje N. Bumpus, Ph.D., director of the Johns Hopkins Department of Pharmacology and Molecular Sciences. “We want therapies to work for as many people as possible. 实现这一目标的最佳途径是让所有人都有机会参与临床研究.”
How Johns Hopkins Medicine Is Restoring Trust in Clinical Research
Unfortunately, 数百年来，伪装成医学的不道德行为使数百万有色人种对医学持怀疑态度，反对参与医学研究. 这包括在美国各地的奴隶身上进行的可怕实验, to the shameful Tuskegee Study of Untreated Syphilis in Black men.
Collaborating with the Community
约翰霍普金斯医学院的研究人员正在与社区领袖合作，向有色人种展示情况是如何变化的. The Community Research Advisory Council, organized by the Institute for Clinical and Translational Research, 是由巴尔的摩地区的社区领袖组成的，他们向研究团队提供反馈，告诉他们如何设计和开展研究，从而为整个社区提供价值. 这些研讨会为人们提出问题和解决他们的关切提供了一个论坛. 约翰霍普金斯儿童健康中心也有一个社区咨询委员会和华盛顿的约翰霍普金斯医院, D.C. region have members of the community among their Research Review Committees.
Overcoming Bias and Access Issues in the System
Beyond building awareness and restoring trust among people of color, 约翰霍普金斯医学院也在努力使所有人都能更容易地参与临床研究.
有时一项研究的设计方式会无意中排除那些在临床研究中代表性不足的人, including people of color. 所有的临床试验都有一个特征列表，帮助确定研究中包括或不包括哪些类型的参与者. This is intended to help show that a treatment is effective in a specific group, such as cancer patients. But if that list is too narrow, certain populations can be left out. 临床试验的其他方面——从研究地点到需要参与者的时间——也会影响人们的参与.
As one way to help deal with these issues, 约翰霍普金斯医学院的所有管理人员及以上都需要接受无意识偏见方面的培训. 无意识偏见是人们对某些群体形成的偏见或刻板印象，他们甚至可能没有意识到. These programs will help people better understand bias in all forms—including racism, sexism and ageism—and how it can be overcome.
To further encourage equity in research, 约翰霍普金斯医学院也在寻求提高研究团队本身的多样性. 这包括从雇用更多的有色人种科学家到确保有色人种在研究团队中担任不同的职位，再到招聘双语研究人员. 这有助于使不同的参与者更舒适，更有可能参加研究.