Journal article

Desiderata for Digital Consent in Genomic Research

Carlos Luis Parra-Calderon, Jane Kaye, Alberto Moreno-Conde, Harriet Teare, Francisco Nunez-Benjumea

Journal of Community Genetics | Springer (part of Springer Nature) | Published : 2018

Abstract

Herein, we describe the characterization of a Digital Consent (DC) System to support current ethical-legal issues associated with challenges posed by informed consent for genomic research. A potential solution to support ongoing interaction with patients and allow control over how their data and samples are being used in genomic research can be Digital Consent based. But there are other challenges that need to be addressed, such as incidental findings when analyzing the results of genomic tests (not expected). This paper addresses security and privacy recommendations for the development of precision medicine, and the interoperability references of Health Information Standardization Organizat..

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University of Melbourne Researchers

Grants

Awarded by H2020 COST action


Awarded by Platform for Innovation in Medical and Healthcare Technologies (ITEMAS Platform) by Carlos III National Institute of Health


Awarded by European Cooperation in Science and Technology


Funding Acknowledgements

This research has been partly funded by H2020 COST action IS1303 CHIP ME and by the Platform for Innovation in Medical and Healthcare Technologies (ITEMAS Platform, code PT13/0006/0036) by Carlos III National Institute of Health, co-funded by FEDER from European Regional Development Funds (European Union). This study was partially funded by European Cooperation in Science and Technology (COST Action IS1303).