The pandemic has highlighted and exacerbated two harsh realities about prejudice in medical research: People of color are routinely excluded from research studies – and black and brown individuals, in turn, feel distant and suspicious of scientists and those who fund them.
The result: while people of color are disproportionate risk for serious illnesses and deaths due to Covid-19, nearly 80 percent of all the data used to study how genes influence health comes from people of European descent.
Despite growing evidence that the geographical origin of a person is a important determinant disease risk, progression and response to treatment, scientists, health research funders, clinical trial organizers and researchers have failed to fully integrate it into most medical studies. This omission undermines our understanding of basic human health, disease and cell biology, and slows progress toward adequate treatments for people who are not white or of predominantly European ancestry.
This lack of representation has many causes. Donors generally do not specify the need for various study participants as a requirement for research funding. Many racial and ethnic groups have a justified distrust of scientific research due to structural racism, historical mischief, and socio-economic and health care inequalities – and a lack of engagement of researchers. Physicians who refer patients to participate in studies face a patient who takes time–referral process, restrictive and ubiquitous participation criteria racial prejudice in medical training and practice.
The combined effect is low recruitment and registration of participants color in clinical trials, an under-representation in biomedical data, and a poor understanding of the health issues that affect blacks and browns.
Incorporating data from diverse ancestral populations is simply good science. Leaving it aside not only hinders medical progress to the detriment of the majority of people around the world, but also ignores a wealth of untapped scientific research and discovery. During the pandemic, this has meant that the world’s health systems are less equipped to help people of color most affected by the coronavirus.
Inadequate community outreach is an important part of the problem, presenting an opportunity for donors. The philanthropic response to the pandemic has always required more than support for laboratory research. It was necessary partnership with healthcare providers and community organizations in underserved areas and with public health services to disseminate scientific information on the importance of masking, vaccination and screening of those most at risk of contracting the disease.
Connecting effectively with those most at risk during the research process should be standard practice.
Physicians should be trained to interact with a diverse sample of potential study participants. Institutions should broaden their inclusion criteria to accept a more diverse pool of participants. And donors should demand the incorporation of community participatory research in all the health research they fund. Through this approach, researchers work directly with members of grassroots groups on study design, data collection, and interpretation of results, and then jointly share the results and benefits with community members.
Advancing a cultural change
Funders can help bring about a cultural change in health research by not only asking researchers to increase the diversity of studies and community engagement, but also by giving them the opportunity to put in place systems and mechanisms. people to make these practices the norm. Community engagement itself should be treated as a scientific and standard component of any research project involving human subjects – built into the research design from the start, not as an add-on.
Foundations can accelerate this process by encouraging research fellows to develop a clear community engagement plan specifying how researchers will work with diverse communities to collect data in one. ethical and culturally sensitive way. Several resources are available to assist with this work, including the community engagement guidelines from the Institute for Patient-Centered Outcomes Research, the National Institutes of Health, and the Centers for Disaster Control and Prevention.
A handful of large-scale studies with philanthropic support demonstrate the value of targeting diverse populations early on.
the Dallas Cardiac Study, originally funded by the now-closed Donald W. Reynolds Foundation and later by the Hoffman Family Center in Genetics and Epidemiology, has made the ethnic diversity of trial participants a priority since its launch in 2000. To recruit people of color, he connected with them through health care providers and community organizations, as well as places of worship and hair salons.
Expertise in Public Health and Social Sciences
If achieving such diversity is a priority, scientists should not be the ones leading these efforts. Computational biologists have expertise in analyzing data, not in building relationships with a community. For this work, experts from disciplines such as social sciences and public health should be included in research teams.
Health studies supported by the Chan Zuckerberg Initiative, where the three of us work, let’s take this approach. We stipulate the inclusion of community engagement experts in research teams and ask potential grantees to submit a plan to engage communities their work affects as part of the funding application process.
These parameters are an essential part of our support to the international community. Human Cell Atlas Project, a popular collaborative effort to create a map of the 37 trillion human cells to better understand the cellular mechanisms of health and disease. Last year we launched a financing project expand the diversity of cells included in the project, with particular emphasis on the poorly studied black, Latin, Southeast Asian and indigenous groups.
We encourage other research funders to follow our approach. The glaring inequalities exacerbated by the pandemic show why new medical treatments must be based on data representative of the diversity of humanity. The tools for doing this are readily available. We just need to use them.