ELSIcon2022 • Paper • May 27, 2022
Erin Rothwell, Caren Frost, Bob Wong, Erin Johnson
Promoting informed decision making for research while concurrently advancing equity and justice for underserved populations for the research use of residual newborn screening (NBS) dried bloodspots is challenging. A significant value of biobanks created from NBS dried bloodspots is the participant diversity, representing the whole population in a geographical area. Low permission rates for research use, particularly by populations who are historically underrepresented, undermines the diversity of the biobank and reduces the ability to address research questions relevant to health disparities. Nevertheless, these underrepresented populations may have more significant concerns about research done without explicit consent given prior historical use of samples without permission. Thus, it is important to make sure that parents are provided sufficient information to make an informed choice.
We completed four focus groups with under-represented populations (Hispanic, African-American, Pacific Islander) to gather feedback about an existing consent education intervention for the research use of NBS dried bloodspots. Focus group attendees (n=31) interacted with English or Spanish language versions of the consent tools prior to the discussion. A content analysis of the transcripts revealed key findings across groups: (1) the importance of providing education throughout pregnancy and at birth, and the need to (2) clearly delineate the difference between NBS and DBS research, (3) make research results (including birth year of spots used) public, and (4) provide education in multiple forms across multiple platforms. Results suggest a need to further explore how educational preferences and needs differ among racial/ethnic groups as part of the consent process.