A 2015 study demonstrates a continuing, significant lack of participation among minorities in clinical trials in the US. This is the case even though more than 70% of Americans stated that, if advised by their physicians, they would participate in a clinical trial.

The importance of participation is critical because individuals of different race, ethnicity and gender experience disease and interact with therapies differently. This means that many clinical trials cannot accurately reflect the positive or negative effects of a drug, biologic, or medical device on all segments of the population. This limitation in inclusion has long been recognized as a weakness in clinical research.

Important work has been accomplished in identifying the history leading to this disparity, such as the mistrust resulting from the deception that occurred in the Tuskegee Syphilis Study or the studies conducted in Guatemala by the United States in the 1940s. This history underpins the lack of trust by some minority groups that continues today as the primary reason individuals decline participation in trials. But, other barriers also exist.  These include language differences, poverty, lack of access to health services, privacy concerns, physicians’ lack of knowledge and limited accessibility to easily understood clinical trial information.  Such barriers add to the challenge of achieving equitable representation.

Recognizing the causes of low participation among minorities in clinical trials is not enough. WCGF has adopted a new priority of increasing the number of minorities who enroll in clinical trials.  The Foundation will support projects that increase the number of minority physician/investigators, supporting mentoring and monitoring of these physicians and assist them in educating their patients about the benefits of clinical trial participation and eliminating the many barriers to participation for minorities.

To learn more about this important topic

http://journals.plos.org/plosmedicine/article?id=10.1371/journal.pmed.1001918

http://www.researchamerica.org/news-events/news/new-national-public-opinion-poll-shows-majority-americans-would-participate

http://www.sciencemag.org/news/2011/08/panel-blasts-ethics-science-1940s-guatemala-studies

https://www.nimhd.nih.gov/resources/reports-data.html

https://news.aamc.org/diversity/article/more-minorities-needed-clinical-trials-research/

http://www.nejm.org/doi/full/10.1056/NEJM200011233432121#t=article

https://www.nytimes.com/2016/12/23/health/cancer-trials-immunotherapy.html?_r=0