Do patients and research subjects have a right to receive their genomic raw data? An ethical and legal analysis

BMC Medical Ethics
http://www.biomedcentral.com/bmcmedethics/content
(Accessed 18 Jan 2020)

 

Do patients and research subjects have a right to receive their genomic raw data? An ethical and legal analysis
As Next Generation Sequencing technologies are increasingly implemented in biomedical research and (translational) care, the number of study participants and patients who ask for release of their genomic raw data is set to increase. This raises the question whether research participants and patients have a legal and moral right to receive their genomic raw data and, if so, how this right should be implemented into practice.
Authors: Christoph Schickhardt, Henrike Fleischer and Eva C. Winkler
Citation: BMC Medical Ethics 2020 21:7
Content type: Research article
Published on: 16 January 2020