Developing Consent Tools for the Research Community at the German Human Genome-Phenome Archive (GHGA)

Authors

DOI:

https://doi.org/10.52825/cordi.v1i.275

Keywords:

Informed consent, Legacy consent, GDPR, Omics data, Secondary use

Abstract

The German Human Genome-Phenome Archive (GHGA) aims to enable the responsible sharing of human omics data for secondary research use across Germany and Europe. Informed consent is the most commonly used legal and ethical basis for processing omics data for secondary use. However, obtaining informed consent from Data Subjects can be challenging when data is to be widely shared and reused beyond the initial purpose of collection. To address these challenges, the ELSI (Ethical, Legal, and Social Implications) Group of GHGA has developed consent tools for the research community. First, we have developed a toolkit for prospective data collection, which consists of consent modules and complementary advice on how to update or create new consent forms. Second, we have created a legacy consent toolkit that can be used by researchers to assess whether the consent under which data was originally collected covers further data processing for secondary research purposes.

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References

Andreas Bruns, Anna Benet-Pages, Jan Eufinger, Holm Graessner, Oliver Kohlbacher, Fruzsina Molnár-Gábor, Simon Parker, Christoph Schickhardt, Oliver Stegle, & Eva Winkler, “Consent Modules for Data Sharing via the German Human Genome-Phenome Archive (GHGA),” Zenodo, July, 2022, doi: 10.5281/zenodo.6828131, https://zenodo.org/record/6828131#.ZEKD3i0Rp-V (21/04/2023).

GHGA, “Legacy Consent Toolkit.” GHGA Website. https://www.ghga.de/resources/legacy-consent (21/04/2023).

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Published

2023-09-07
Received 2023-04-21
Accepted 2023-06-29
Published 2023-09-07

Funding data