ASBMB recommends ways to support data equity

The American Society for Biochemistry and Molecular Biology sent a letter to the National Science and Technology Council Subcommittee on Equitable Data at the White House Office of Science and Technology Policy on Oct. 3 regarding how federal agencies can better support the production and use of equitable data across different levels of government, the public and the research community.

When the OSTP published a request for information in last month on “Equitable Data Engagement and Accountability,” the ASBMB seized the opportunity to consolidate and expand upon its previous recommendations to address inadequacies in data collection, reporting and infrastructure across federal science agencies.

Briefly, the ASBMB told the subcommittee that (1) members from underrepresented groups must be placed as leaders in research projects that involve their communities, (2) minority-serving institutions and emerging research institutions need more visibility and support, and (3) there are significant gaps in the data collection, assessment and reporting of underrepresented groups in science, technology, engineering and mathematics (STEM) and higher education.

Equitable data as a tool for change

In a report by the OSTP Equitable Data Working Group, equitable data is defined as those that “allow for rigorous assessment of the extent to which government programs and policies yield consistently fair, just, and impartial treatment of all individuals.” With equitable data in hand, targeted actions can be pinpointed to remove barriers and improve outcomes for underserved communities.

Marc Gillespie, a professor at St. John’s University and a member of the ASBMB Public Affairs Advisory Committee, has years of experience developing statistical approaches for different types of program assessments. He explained the significant cost of inequity in data and the galvanizing impact that equitable data could provide.

“There are far too many examples where society and the government have failed to provide access to data in a fair and equitable manner and allowed persons from particular groups an advantage over others,” Gillespie said.

Furthermore, Gillespie called for transparent, fair and equitable access to data to provide individuals and institutions with powerful tools for change and also build trust in our society “at a time when that trust is most needed.”

Gillespie’s remarks were also reflected in the society’s letter, which wrote that disaggregated datasets are crucial to identify and address inequities experienced by historically marginalized populations and called on the subcommittee to create standards for providing publically available de-identified and disaggregated datasets.

To ensure equitable data collection, the ASBMB also had several recommended changes to the way federal science agencies survey lesbian, gay, bisexual, transgender, queer, intersex, asexual and more (LGBTQIA+) individuals and individuals with disabilities.

Inclusion should be front and center

Including diverse participants in scientific research studies is critical to collecting equitable data.

National efforts to increase the inclusion of historically underrepresented groups in research, such as the All of Us Research Program at the National Institutes of Health and the Enhance EQUITY Initiative at the U.S. Food and Drug Administration, are well underway.

To better engage underserved communities, the ASBMB recommended that research projects involve leaders from these communities throughout the process from planning all the way to publication.

The society wrote: “The scientific community must address the cultural barriers in academia that lead to strained relationships between universities and their local communities.”

In particular, the society highlighted the importance of clear communications with tribal leaders during research efforts because tribal nations experience high rates of adverse outcomes in response to research initiatives due to a lack of understanding of tribal culture by researchers. 

As the subcommittee develops new strategies for resources, programs, training or other tools to facilitate increased data sharing with tribal communities, the ASBMB asserted that “the voices and opinions of tribal leaders must be kept at the forefront.”

Data access is contingent on tools and tech

Once the research community and federal government have equitable data to report, there is still the issue of equitable access. To conduct research with large datasets, there are necessary technologies to perform the analysis, including broadband Internet, hardware with sufficient computing power, security and infrastructure.  

At minority-serving institutions and emerging research institutions (known as MSI and ERIs, respectively), these technologies are less likely to be available as compared with well-funded research universities.

Karen Lewis, associate professor at Texas State University and one of ASBMB’s newest PAAC members, is passionate about increasing broadband and technology access for all Americans.

“Technology and broadband access are increasingly required for success at all levels of education, yet many communities remain severely underserved and underresourced. As a result, these gaps exacerbate the already-profound socioeconomic inequities in our country,” Lewis said.

Lewis added that the COVID-19 pandemic “really highlighted the significant disparities that exist in access to technology, especially reliable broadband.” Alarmingly, up to 30% of Americans in rural areas and tribal lands lack broadband.

The ASBMB noted in its letter the importance of expanding and strengthening broadband access nationwide to ensure equitable access to data for both underserved research communities and the general public.

To ensure the general public can not only access but also understand future equitable datasets, the ASBMB made two recommendations to the subcommittee. Because over half of the U.S. population reads at below a sixth-grade level, the society recommended that federal science agencies generate, publish and distribute data summary reports written in lay terms to make equitable data more accessible and usable for members of the public. The ASBMB also raised concern that data analysis would be limited to those with knowledge of third-party data analytic software and programs. To help reduce this barrier, the society asked that the subcommittee ensure that federal agencies accompany datasets with embedded data-visualization tools to make it easier for the public to investigate and understand trends within the data.