Skip to main content
Series
The 5th ELSI Congress - ELSIcon2022

ELSIcon2022 Paper: Community Perspectives on Electronic Consent Education for the Retention of Newborn Screening Bloodspots

Type
Conference

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. 

Tags

Keywords
Attitudes about sharing biological samples and health data
Biobanking and genomic databases
Paper
Pre-Recorded

Videos in Series

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 12

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 13

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 17

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 15

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Fresh Air for Genetic Data Sharing

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Flash Session 2

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Moderated Plenary Panel

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 14

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 9

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 11

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 10

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Trainee Networking Session: Working with NHGRI

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Diversity’s Pandemic Distractions

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 6

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 5

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 8

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 7

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 2

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 1

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Flash Session 1

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 4

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 3

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Toward an anthropology of rare disease

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: In the Shadows of Virtual Family Trees

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: ELSI and the New Precision Stewards?

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: The ELSI of Pandemic Biobanking

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Whose future should we worry about?

Related Videos