Of late, the terms “Diversity” & “Inclusion” are everywhere. There has been an acknowledgement that many different institutions do not proportionally reflect the citizens or their needs. Racial and ethnic minorities, women and other underrepresented groups are standing up and demanding to be heard, to be respected and be included in all aspects of life. Diversity is now seen as a smart move with tangible positive results. Iconic companies like Google and JP Morgan Chase are reporting their diversity numbers. In media & entertainment the success of movies like Crazy Rich Asians, Black Panther & Wonder Women has proven that diversity & inclusion pays.

Unfortunately, the one area where there has not been any progress in diversity & inclusion is perhaps the most important; the Pharmaceutical Clinical Trial and Research Industry. Asian, Black, Latino and Native American populations are critically underrepresented in clinical trials and studies. Together these groups are 40% of the US population or 130 million Americans and yet represents less than 6% of clinical trials and studies. Recent research shows that only 2 percent of cancer studies and less than 5 percent of pulmonary studies have studied enough minorities to provide useful information. Even for conditions that disproportionally affect these groups, clinical trials are not diverse or inclusive enough.

According to the National Cancer Institute, Black men are twice as likely as white men to die from prostate cancer but represent 4% of clinical trial participants.

The CDC reports that suicide is one of the leading causes of death among Asian-American women under 45 years of age and yet Asian-Americans constituted less than 1% of trials for CDER-approved treatments of major depressive disorders.

Cancer is the leading cause of death among Hispanics, yet Hispanic cancer patients only reflect 4% of participants in cancer clinical trials in the U.S., according to the Nation Cancer Institute.

Native Americans are often not included at all in studies.

This is not trivial as the clinical trials and studies inform doctors decision as to how to treat their patients. Clinical trials are studies that determine if a medication works. If participants of trials are not diverse enough or do not include a large sample of people who ultimately take the medication, it can lead to big problems in the real world. Treatments that work for certain groups may not work well for others. Thus, when minorities aren’t included in clinical trials, the treatments derived from the trials may not work well for them:

New research indicate that genetic variants that can contribute to asthma in white children aren’t the same for African-American children. This may explain why African-Americans and Puerto Ricans do not respond as well to some of the most common asthma controller medications and partly why Black children are 6 times likely to die from Asthma.

Asian people with epilepsy are supposed to get genetic testing before being prescribed the seizure medication carbamazepine. This medication can damage the skin and internal organs of patients with a certain gene variant.

The blood thinner clopidogrel, or Plavix, doesn't work in 75% of Pacific Islanders whose bodies don't produce the enzyme required to activate the drug.

TO BE ABSOLUTELY CLEAR : African, Asian, Native American, and European biology is not different from one another. None of this is evidence that race is a “biological construct”. What can be different among various ethnic groups is the patterns of genes we inherit from our families. Specifically and what causes disease or how disease manifests in different people or group.

Example: Most humans will be at higher risk of heart attacks when there’s more LDL cholesterol in their blood; that’s the basic biology. The differences here are more about why LDL accumulates more greatly in one ethnicity and not another.

As we move towards a very promising future of precision medicine, it’s imperative that research include enough underrepresented minority populations to accurately capture a more comprehensive genetic data. The NIH has promised to recruit 1 million people across the US to participate in a long-term study on the intersection of genetics, lifestyle, environment, and health with a special emphasis on underrepresented groups.

Technology can and should play a major part. Websites like Drugviu makes it easier for minorities to see how medications affects people that look like them. It combines real world reviews and experiences about a medication as reported by minorities with pharmacist and clinical trial data to give a clearer picture of what to expect when taking that medication.

As the country becomes more diverse, we should ensure medical research and clinical trials reflects and includes this diversity. This will greatly impact health outcomes and improve quality of life for all Americans.

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