Comparing Attitudes About Genomic Privacy and Data Sharing in Adolescents and Parents of Children Enrolled in a Genomic Research Repository.

Creator(s)

Courtney D. Berrios, Children's Mercy HospitalFollow
Shelby Neal, Children's Mercy Kansas City
Tricia N. Zion, Children's Mercy Kansas CityFollow
T Pastinen, Children's Mercy HospitalFollow

Document Type

Article

Publication Date

2024

Identifier

DOI: 10.1080/23294515.2023.2232780

Abstract

BACKGROUND: Sharing of genomic data aims to make efficient use of limited resources, which may be particularly valuable in rare disease research. Adult research participants and parents of pediatric research participants have shown support for data sharing with protections, but little is known about adolescent attitudes on genomic privacy and data sharing.

METHODS: In-depth interviews were conducted with 10 adolescents and 18 parents of children enrolled in a pediatric genomic research repository. Interview transcripts were analyzed for themes on attitudes toward genomic privacy, restricted-access data sharing, and open-access data sharing. Findings in adolescent and parent participants were compared and contrasted.

RESULTS: No adolescents endorsed privacy concerns for restricted-access data sharing. Both adolescents and parents saw value in data sharing for reaching the goals of research and discussed trust in institutions and researchers to protect their data and use it as intended. Adolescents were more likely than parents to accept open-access data sharing, including after risks were discussed.

CONCLUSIONS: In this exploratory study, adolescents and parents enrolled in a genomic research repository shared many attitudes about genomic data sharing, but adolescents were less concerned about privacy and more agreeable toward open-access data sharing. Future research is needed to investigate this hypothesis in expanded populations and settings, and to clarify whether adolescent attitudes change with age and experiences.

Journal Title

AJOB Empir Bioeth

Volume

15

Issue

1

First Page

33

Last Page

40

MeSH Keywords

Adult; Child; Humans; Adolescent; Privacy; Information Dissemination; Parents; Attitude; Genomics

Keywords

Data sharing; adolescents; genomic; parents; privacy; repository

Comments

Grants and funding

• UL1 TR002366/TR/NCATS NIH HHS/United States

Recommended Citation

Berrios C, Neal S, Zion T, Pastinen T. Comparing Attitudes About Genomic Privacy and Data Sharing in Adolescents and Parents of Children Enrolled in a Genomic Research Repository. AJOB Empir Bioeth. 2024;15(1):33-40. doi:10.1080/23294515.2023.2232780