The promise of genomics research
Genomics is the study of the ways genes interact with each other and the environment to influence a variety of traits and characteristics. Genes play an important role in virtually every aspect of human health and health outcomes, including infectious diseases and many complex conditions such as cancer, diabetes, and cardiovascular disease. By contributing to better understanding of these relationships, genomics research is the foundation for advancements in medicines and healthcare.
Increasing Black American representation in genomics research will directly contribute to medical advances and related health benefits for people with African ancestry. Bridging the barriers that keep participation low is one way to help achieve health equity for Black Americans.
What’s the problem?
Research in human genetics has a complicated past. One legacy is that Black Americans are under-represented in genomics research. This leaves significant gaps in scientific knowledge, and contributes to current and future health disparities across different racial and ethnic groups. Intentional action is needed to change this dynamic. Regeneron is working with cross-sector collaborators to actively improve access to the benefits of genomic research for people of African ancestry.
This Challenge focuses on three known factors that limit the participation of Black Americans in genomic research: access, awareness, and trust.
Bias in medical research and trial design cause and perpetuate inequities. Research design influences who can or will participate in research. Studies are often designed to make things easy for researchers, while ignoring real-life hurdles for potential participants. This is one reason why Black Americans have been under-represented at all stages of DNA-related research, and in many cases not even asked to participate.
Factual information about genomics research is not always available, or not communicated in ways that work for most people. Misinformation spreads easily, and can increase concerns about costs, safety, privacy, and worries about discrimination from insurers or employers. The benefits of genomics research are not always communicated in ways that are meaningful, leaving many people without compelling reasons to participate.
It is not surprising that trust influences participation in genomics research. There are many examples of how research in human genetics has reflected and perpetuated racial injustice. Individuals, families and communities may share skepticism about how data will be stored, who will have access, and how information might be used now or in the future. Negative experiences with healthcare providers, insurers, and pharmaceutical companies also influence who is willing to participate in research, regardless of the potential benefits.
The DNA Diversity Challenge
Regeneron is working to improve medicine for all. Regeneron and its collaborator, Base 11, seek the help of young changemakers like you to increase the participation of Black Americans in genomics research by addressing any of these key known barriers: access, awareness, and trust. Your ideas will shape the ways Regeneron and collaborators from across the healthcare, academic and nonprofit sectors combine their unique strengths to support increased participation of Black Americans in genomics research.
There are two ways to get involved: