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Open Access 25-10-2021 | Original Paper

Controlling my genome with my smartphone: first clinical experiences of the PROMISE system

Authors: Ali Amr, Marc Hinderer, Lena Griebel, Dominic Deuber, Christoph Egger, Farbod Sedaghat-Hamedani, Elham Kayvanpour, Daniel Huhn, Jan Haas, Karen Frese, Marc Schweig, Ninja Marnau, Annika Krämer, Claudia Durand, Florian Battke, Hans-Ulrich Prokosch, Michael Backes, Andreas Keller, Dominique Schröder, Hugo A. Katus, Norbert Frey, Benjamin Meder

Published in: Clinical Research in Cardiology | Issue 6/2022

Abstract

Background

The development of Precision Medicine strategies requires high-dimensional phenotypic and genomic data, both of which are highly privacy-sensitive data types. Conventional data management systems lack the capabilities to sufficiently handle the expected large quantities of such sensitive data in a secure manner. PROMISE is a genetic data management concept that implements a highly secure platform for data exchange while preserving patient interests, privacy, and autonomy.

Methods

The concept of PROMISE to democratize genetic data was developed by an interdisciplinary team. It integrates a sophisticated cryptographic concept that allows only the patient to grant selective access to defined parts of his genetic information with single DNA base-pair resolution cryptography. The PROMISE system was developed for research purposes to evaluate the concept in a pilot study with nineteen cardiomyopathy patients undergoing genotyping, questionnaires, and longitudinal follow-up.

Results

The safety of genetic data was very important to 79%, and patients generally regarded the data as highly sensitive. More than half the patients reported that their attitude towards the handling of genetic data has changed after using the PROMISE app for 4 months (median). The patients reported higher confidence in data security and willingness to share their data with commercial third parties, including pharmaceutical companies (increase from 5 to 32%).

Conclusion

PROMISE democratizes genomic data by a transparent, secure, and patient-centric approach. This clinical pilot study evaluating a genetic data infrastructure is unique and shows that patient’s acceptance of data sharing can be increased by patient-centric decision-making.

Graphic abstract

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Title: Controlling my genome with my smartphone: first clinical experiences of the PROMISE system
Authors: Ali Amr
Marc Hinderer
Lena Griebel
Dominic Deuber
Christoph Egger
Farbod Sedaghat-Hamedani
Elham Kayvanpour
Daniel Huhn
Jan Haas
Karen Frese
Marc Schweig
Ninja Marnau
Annika Krämer
Claudia Durand
Florian Battke
Hans-Ulrich Prokosch
Michael Backes
Andreas Keller
Dominique Schröder
Hugo A. Katus
Norbert Frey
Benjamin Meder
Publication date: 25-10-2021
Publisher: Springer Berlin Heidelberg
Published in: Clinical Research in Cardiology / Issue 6/2022
Print ISSN: 1861-0684
Electronic ISSN: 1861-0692
DOI: https://doi.org/10.1007/s00392-021-01942-8

Keynote webinar | Spotlight on medication adherence

Springer Medicine

Controlling my genome with my smartphone: first clinical experiences of the PROMISE system

Abstract

Background

Methods

Results

Conclusion

Graphic abstract

Keynote webinar | Spotlight on medication adherence

Springer Medicine

Abstract

Background

Methods

Results

Conclusion

Graphic abstract

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