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

Controlling my genome with my smartphone: first clinical experiences of the PROMISE system. Amr, A., Hinderer, M., Griebel, L., Deuber, D., Egger, C., Sedaghat-Hamedani, F., Kayvanpour, E., Huhn, D., Haas, J., Frese, K., Schweig, M., Marnau, N., Krämer, A., Durand, C., Battke, F., Prokosch, H., Backes, M., Keller, A., Schröder, D., Katus, H. A., Frey, N., & Meder, B. Clinical Research in Cardiology, 10, 2021.
doi abstract bibtex

"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."

@article{article,
    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 = {2021},
    month = {10},
    pages = {1-13},
    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."},
    title = {Controlling my genome with my smartphone: first clinical experiences of the PROMISE system},
    journal = {Clinical Research in Cardiology},
    doi = {10.1007/s00392-021-01942-8}
}

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