Series
The 5th ELSI Congress - ELSIcon2022
Title
ELSIcon2022 Paper: Sociodemographic diversity in clinical genomics research
Type
Conference

ELSIcon2022 • Paper • May 31, 2022

Meghan Halley, Holly Tabor, Jennifer Young

Background: Barriers to clinical genomics research participation are particularly critical for medically underserved patients who also are undiagnosed, as participation in research may be their only pathway to receiving a potential genetic diagnosis. In order to better characterize the barriers to research participation for these patients, we interviewed racially diverse participants in a clinical genomic research study, the Undiagnosed Diseases Network (UDN), about their pathways to genomic research and their experience of participation.

Methods: We conducted semi-structured interviews with 30 diverse parents of children enrolled in the UDN. Twenty interviews were conducted in English and 10 were conducted in Spanish. Qualitative analyses were conducted on the interview transcripts to identify themes both across and within participant subgroups focused on pathways to participation.

Results: Parents self-identified as Hispanic (n=14), non-Hispanic Asian (n=4), non-Hispanic White (n=11), and multiracial (n=2). Participants varied in how they accessed clinical genomics research, with most families relying on provider-initiated referral. A smaller group of families self-initiated referral, all of whom had higher levels of education, income, and were native English-speakers. Families ranged in their expectations of their participation in genomic sequencing research, and their expectations were influenced a range of factors including cultural norms and values, primary language, and trust in physicians.


Significance: The results of this exploratory study suggest that undiagnosed patients with fewer socioeconomic resources are less likely to self-refer to clinical genomics research and also point to additional factors, beyond race ethnicity, that may shape access in diverse patient populations.

Tags

Keywords
Live
Paper
Motivation to participate in research
Patient-provider communication

Videos in Series

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

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 13

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

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

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

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 Trainee Networking Session: Working with NHGRI

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 Session 2

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

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?

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

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

Related Videos