Cancer Research Is Hampered By Lack Of Racial Data

Cancer has no race, so why do new innovative cancer drugs discriminate based on race and ethnic groups, asks Digonto Chatterjee.

Personalised medicine provides a lot of promise for the development of new cancer therapies based on an individual's genetic profile.

However, clinical trials that are conducted before a new drug can be approved in the US show disproportionate participation of ethnic minorities in such trials.

The National Institutes of Health (NIH) Revitalization Act of 1993 established guidelines for the inclusion of racial/ethnic minorities and women in clinical research.

However, studies have shown that racial/ethnic minorities are vastly underrepresented in clinical trials relative to their proportion of new cancer cases and deaths.

A recent study by Dr Max Kates and his team from Johns Hopkins University shows that in bladder cancer clinical trials less than 50 per cent of patients included data on patient race/ethnicity.

Worldwide and specifically in the US, billions of private and public dollars are spent on finding new innovative drugs for cancer.

Several new drugs are based on genetic markers that cancer patients express under disease conditions.

Certain cancers, such as pancreatic cancer, disproportionately affect people of colour.

Data show that less than 5 per cent of patients identified in pancreatic cancer clinical trials are Black or Asian.

It is important to raise awareness of this important topic and educate the public and next generation scientists and clinicians.

The US Food and Drug Administration (FDA), the regulatory agency that approves the marketing of new drugs, is aware of this but are they doing enough?

The FDA says, 'Participants in clinical trials should represent the patients that will use the medical products.

'This is often not the case -- people from racial and ethnic minority and other diverse groups are underrepresented in clinical research.

'This is a concern because people of different ages, races, and ethnicities may react differently to certain medical products.'

During my own research, I found a similar problem in pancreatic cancer data to what Dr Kates and his team found for bladder cancer.

Less than 50 per cent of patients' data included their race/ethnicity.

Among the patients that had that data, more than 90 per cent were identified as Caucasian (White).

This finding highlights a severe underrepresentation of minorities in clinical trials which ultimately leads to the development of drugs that might not be beneficial to cancer patients of colour.

My research study shows race and ancestry specific genetic alterations exist in pancreatic cancer patients.

This study provides a foundation for the development of race and ancestry specific diagnostic/prognostic biomarkers and targeted therapeutic options with better survival outcomes for cancer patients.

My research was presented in the American Association of Cancer Research conference (Abstract 5862: Racial disparities in pancreatic cancer: A quantitative proteo-genomic analysis (external link)).

I continue to expand on my research to look at the ancestry-based genetic diversity in other cancers and diseases with the goal of developing therapies that are more equitable, and personalised therapy based on ancestry-based genetic markers.

From the several studies including mine, it is evident that millions of cancer patients of colour can be saved through the development of new drugs that are based on ancestry-specific genetic markers targeted to patients from specific ethnic backgrounds.

Additionally, there is dire need to raise awareness of this issue among stakeholders, including scientists, clinicians, educators and policymakers, so that more patients of colour and diverse ancestral and ethnic backgrounds be included in clinical trials.

I have also started a petition to raise awareness of this important issue: Racial Equity and Diversity in Cancer Drug Development (external link).

Digonto Chatterjee, a high school student from Maryland, USA, is passionate about raising awareness about and contributing to solving health disparity in the US and the world.

Feature Presentation: Ashish Narsale/Rediff.com