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

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posted on 2024-04-26, 12:18 authored by Ali Amr, Marc Hinderer, Lena Griebel, Dominic Deuber, Christoph Egger, Farbod Sedaghat-Hamedani, Elham Kayvanpour, Daniel Huhn, Jan Haas, Karen Frese, Marc Schweig, Ninja MarnauNinja Marnau, Annika Krämer, Claudia Durand, Florian Battke, Hans-Ulrich Prokosch, Michael BackesMichael Backes, Andreas Keller, Dominique Schröder, Hugo A Katus, Norbert Frey, Benjamin Meder
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.

History

Primary Research Area

  • Trustworthy Information Processing

Journal

Clinical Research in Cardiology

Volume

111

Page Range

638-650

Publisher

Dietrich Steinkopff Verlag

Open Access Type

  • Hybrid

Sub Type

  • Article

BibTeX

@article{Amr:Hinderer:Griebel:Deuber:Egger:Sedaghat-Hamedani:Kayvanpour:Huhn:Haas:Frese:Schweig:Marnau:Krämer:Durand:Battke:Prokosch:Backes:Keller:Schröder:Katus:Frey:Meder:2022, title = "Controlling my genome with my smartphone: first clinical experiences of the PROMISE system", author = "Amr, Ali" AND "Hinderer, Marc" AND "Griebel, Lena" AND "Deuber, Dominic" AND "Egger, Christoph" AND "Sedaghat-Hamedani, Farbod" AND "Kayvanpour, Elham" AND "Huhn, Daniel" AND "Haas, Jan" AND "Frese, Karen" AND "Schweig, Marc" AND "Marnau, Ninja" AND "Krämer, Annika" AND "Durand, Claudia" AND "Battke, Florian" AND "Prokosch, Hans-Ulrich" AND "Backes, Michael" AND "Keller, Andreas" AND "Schröder, Dominique" AND "Katus, Hugo A" AND "Frey, Norbert" AND "Meder, Benjamin", year = 2022, month = 6, journal = "Clinical Research in Cardiology", number = "6", pages = "638--650", publisher = "Dietrich Steinkopff Verlag", issn = "0300-5860", doi = "10.1007/s00392-021-01942-8" }