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...

Ausführliche Beschreibung

Gespeichert in:
Bibliographische Detailangaben
Hauptverfasser: Schickhardt, Christoph (VerfasserIn) , Fleischer, Henrike (VerfasserIn) , Winkler, Eva C. (VerfasserIn)
Dokumenttyp: Article (Journal)
Sprache:Englisch
Veröffentlicht: 16 January 2020
In: BMC medical ethics
Year: 2020, Jahrgang: 21
ISSN:1472-6939
DOI:10.1186/s12910-020-0446-y
Online-Zugang:Verlag, lizenzpflichtig, Volltext: https://doi.org/10.1186/s12910-020-0446-y
Volltext
Verfasserangaben:Christoph Schickhardt, Henrike Fleischer and Eva C. Winkler
Beschreibung
Zusammenfassung: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.
Beschreibung:Gesehen am 27.04.2020
Beschreibung:Online Resource
ISSN:1472-6939
DOI:10.1186/s12910-020-0446-y