Study Reveals Racial and Demographic Disparities in Clinical Trials

COVID-19大流行引发了大规模的疫苗研发工作，这不可避免地需要从临床试验中获得大量数据。

While the presumed goal of the clinical trial criteria is accuracy, efficacy, and objectivity, there is a边缘化人口的经常性问题making up low percentages of participants within clinical trials across the board.

A recent study published in JAMA Networkwhich included 230 trials based in the United States, including over 219,000 participants aimed to answer the question, "Do vaccine clinical trials equitably represent individuals who identify as members of underrepresented racial/ethnic groups, are women, and are people aged 65 years or older?"

他们围绕着有色人种群体，特别是拉丁裔和黑人群体的暗淡表现的假设是正确的。根据这项研究，专家们得出结论“……针对流行病学上重要感染的所有疫苗试验都应包括多样性登记目标。”

Health Equity and Clinical Trials

将种族/少数民族、女性和老年人的数量和百分比与2011年和2018年的美国人口普查数据进行了比较。种族包括黑人或非裔美国人、拉丁美洲人、亚洲人和阿拉斯加土著或土著美国人。

老年人包括65岁以上的人。白人参与者比例过高，几乎占试验人群的78%。黑人和拉丁裔参与者所占比例不到12%，亚裔参与者所占比例不到6%，本地参与者所占比例不到0.5%。

The results of the study showed that both racial and ethnic groups are underrepresented in clinical trials, as well as adults over the age of 65. The longstanding history with medical mistreatment and malpractice alongside gender parity in varying situations led the researchers to assume both women and marginalized ethnic groups would be underrepresented within the trials.

However, ciswomen ultimately accounted for a majority of trial participants, resulting in an overrepresentation.

Recent Examples of This Disparity

Consider this disparity with the fact that the Black American community accounts for 30 percent of the COVID cases despite making up less than fourteen percent of the total US population, and the dangers of underrepresentation within the testing become even more apparent. Again, the result is the marginalized communities receiving the short end of the stick.

There are many diseases and conditions that either affect varied demographic groups differently or more frequently than others. Marginalized communities are often left out of the conversation with testing and studies, sometimes leading to misdiagnosis when an illness arises.

Because individuals with varied ethnic and racial backgrounds can present conditions differently, sometimes symptoms are dismissed or overlooked because they look different than what a doctor may have studied or experienced.

This is common with skin conditions, as textbooks, studies, and trial photos often encapsulate lighter-skinned individual's symptoms, which are bound to vary from someone of color. For example, if a doctor was looking for the documented symptoms of eczema as, "... small, red bumps, which can be very itchy..." accompanied by a photo of a white person, they could easily miss the appearance of the same condition on a person of color.

这种情况在COVID-19大流行期间也出现过。据Stat新闻报道，加州大学皮肤科医生jennalester震惊地发现，该病毒对深色皮肤所产生的皮肤病影响的例子明显缺乏他说：“我很沮丧，因为我们知道Covid-19对颜色群体的影响不成比例……我觉得我眼前正在形成一种差异。”

历史问题

不幸的是，皮肤状况只是一个例子，这种差异并不是新的，因为莱斯特的沮丧和医疗系统内的种族差异是长期存在的。医疗事故很可能是导致黑人和棕色参与者人数较少的一个原因。

有色人种社区有一段肮脏的历史，他们能够信任医疗建议，尤其是来自不熟悉的人的医疗建议。有些恐怖故事有新闻，比如亨丽埃塔的故事,The Tuskeegee Experiment, and the horrific legacy of J. Marion Sims, known as the "Father of Gynecology."

不同种族群体被排除在这些试验和后续治疗之外的问题超出了不便之处。如果不适当地纳入各种背景，药物和治疗就无法准确地向公众推广。

In addition to the issue itself not being new, neither is the acknowledgment that this problem exists. In 2000, the National Institute for Health put forth a Revitalization Act that was said to enforce race and gender diversity among the clinical trials for accuracy. Despite this, a study done in 2017showed that less than 2 percent of participants were from marginalized communities.

Because of the centuries of medical malpractice and dismissal of Black and Brown people, these oversights contribute to the systemic racism within the US. Krystal Jagoo MSW, RSW says, “Unfortunately, it is difficult to imagine how progress can even be made regarding this health equity injustice as the very reality of the need for such inclusion of marginalized groups in research may contribute to their apprehension to participate in such trials.

Jagoo says, "With research like this, it is easy to understand why oppressed folx in the US can often feel hopeless about their outcomes in this country. Especially given how medical racism in the US has contributed to vaccine hesitation from racialized folx, and these study results are particularly discouraging as they only serve to confirm the fears of BIPOC folx that there may be adverse outcomes..”