Do patients and research subjects have a right to receive their genomic raw data? An ethical and legal analysis - Schickhardt, Christoph; Fleischer, Henrike; Winkler, Eva C. (BMC medical ethics, 2020)
Keywords: Access; Access to information; Biomedical research; Civil rights; Confidentiality - ethics; Confidentiality - legislation & jurisprudence; Data security; Education; Ethical Analysis; Ethical aspects; Ethics; Ethics in Biomedical Research; Europe; General Data Protection Regulation; Genetic Privacy - ethics; Genetic Privacy - legislation & jurisprudence; Genetic research; Genetic Research - ethics; Genetic Research - legislation & jurisprudence; Genomes; Genomic; Genomics - ethics; Human rights; Humans; Informed Consent - ethics; Informed Consent - legislation & jurisprudence; Laws, regulations and rules; Legal medicine; Medical ethics; Medical genetics; Medical law; Medical records; Medical research; Nature; Patients; Philosophy; Philosophy of Medicine; Physicians; Raw data; Release; Research Article; Research Personnel - ethics; Research Subjects; Right; Right of privacy; Technology; Theory of Medicine/Bioethics; Europe; Recommendations; Ethics; Privacy; Informational self-determination; Law; Access; Right; Raw data; Genomic; Release; General data protection regulation (GDPR)