Center for Medical Ethics and Health Policy Staff Publications
Language
English
Publication Date
1-1-2022
Journal
Frontiers in Genetics
DOI
10.3389/fgene.2022.876869
PMID
36313457
PMCID
PMC9614211
PubMedCentral® Posted Date
10-14-2022
PubMedCentral® Full Text Version
Post-print
Abstract
This article describes a mixed-methods protocol to develop and test the implementation of a stewardship maturity matrix (SMM) for repositories which govern access to human genomic data in the cloud. It is anticipated that the cloud will host most human genomic and related health datasets generated as part of publicly funded research in the coming years. However, repository managers lack practical tools for identifying what stewardship outcomes matter most to key stakeholders as well as how to track progress on their stewardship goals over time. In this article we describe a protocol that combines Delphi survey methods with SMM modeling first introduced in the earth and planetary sciences to develop a stewardship impact assessment tool for repositories that manage access to human genomic data. We discuss the strengths and limitations of this mixed-methods design and offer points to consider for wrangling both quantitative and qualitative data to enhance rigor and representativeness. We conclude with how the empirical methods bridged in this protocol have potential to improve evaluation of data stewardship systems and better align them with diverse stakeholder values in genomic data science.
Keywords
stewardship, human genomics, ELSI (ethical, legal, and social implications), data governance, cloud, Delphi
Published Open-Access
yes
Recommended Citation
Vasiliki Rahimzadeh, Ge Peng, and Mildred Cho, "A Mixed-Methods Protocol To Develop and Validate a Stewardship Maturity Matrix for Human Genomic Data in the Cloud" (2022). Center for Medical Ethics and Health Policy Staff Publications. 329.
https://digitalcommons.library.tmc.edu/med_ethics/329