Dr. phil. Dr. rer. publ. Brigitte Jansen

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Presentation transcript:

Dr. phil. Dr. rer. publ. Brigitte Jansen Human Biobanks Dr. phil. Dr. rer. publ. Brigitte Jansen

Genetic databases: Population Information Data Basis Technical remarks Exchanging Health Information Structure UK – Biobank (workflow) Iceland Dr.phil. Dr. rer. publ. Brigitte Jansen, Research Center Biotechnology and Law, EUROACAD

Genetic databases: Population Iceland’s Decode, UK BioBank, Quebec’s CartaGene, Estonian Genome Project etc.: Dr.phil. Dr. rer. publ. Brigitte Jansen, Research Center Biotechnology and Law, EUROACAD

Benefits? A long-term resource for the study of genes, environment and health in relation to any common condition Better knowledge of the causes of health and illness in different populations Characterise disease states more precisely Identify important early markers of disease Dr.phil. Dr. rer. publ. Brigitte Jansen, Research Center Biotechnology and Law, EUROACAD

Information (Data) Bases Exploring ramifications of the human genome Privacy regulation Dr.phil. Dr. rer. publ. Brigitte Jansen, Research Center Biotechnology and Law, EUROACAD

Technical remarks Dr.phil. Dr. rer. publ. Brigitte Jansen, Research Center Biotechnology and Law, EUROACAD

Exchanging Health Information Dr.phil. Dr. rer. publ. Brigitte Jansen, Research Center Biotechnology and Law, EUROACAD Source: Health Privacy Project

Structure of the workflow and Datamanegement (source UK BIOBank) Excample:UK – BIOBank Structure of the workflow and Datamanegement (source UK BIOBank)

Data Management (UK-Biobank) NPfIT Primary Care – GP Record Longitudinal “Read” Coded Prescribing Diagnosis Allergies Test Results Events Booking & Scheduling Recruitment Structured Questionnaire Sample Processing Blood Analysis Sample Management Genetic Information Secure Database Hospital Record Episodic Departmental ICD, OPCS, SNOMed Coded Sample Storage NHS National Records NWCS, Spine, Admin Register, Screening, Payments Source: UK-Biobank Dr.phil. Dr. rer. publ. Brigitte Jansen, Research Center Biotechnology and Law, EUROACAD

Information Flows & IT Systems Dr.phil. Dr. rer. publ. Brigitte Jansen, Research Center Biotechnology and Law, EUROACAD Source: UK-Biobank

Informed consent in genetic research is problematic Public awareness and understanding of genetics is growing but still incomplete Nature of genetic information is different Shared with relatives Permanent Predictive Highly personal / identity / secular soul Impossible to foresee uses Dr.phil. Dr. rer. publ. Brigitte Jansen, Research Center Biotechnology and Law, EUROACAD

Right to privacy = human right UN Int’l Covenant on Civil and Political Rights, Article 17: (1) No one shall be subjected to arbitrary or unlawful interference with his privacy, family, home or correspondence, nor to unlawful attacks on his honour and reputation. (2) Everyone has the right to the protection of the law against such interference or attacks. Dr.phil. Dr. rer. publ. Brigitte Jansen, Research Center Biotechnology and Law, EUROACAD

European Convention on Human Rights, Article 8 Everyone has the right to respect for his private and family life, his home and his correspondence. There shall be no interference by a public authority with the exercise of this right except such as is in accordance with the law and is necessary in a democratic society in the interests of national security, public safety or the economic well-being of the country, for the prevention of disorder or crime, for the protection of health or morals, or for the protection of the rights and freedoms of others. Dr.phil. Dr. rer. publ. Brigitte Jansen, Research Center Biotechnology and Law, EUROACAD

Key Issues in Consent for Genetic Research Rules required for any feedback of results Responsible use of data for research Must not disclose potentially harmful data without fully informed consent Recontact for consent not normally practical in long term studies Protection provided by advocate groups, right to withdraw and anonymity Dr.phil. Dr. rer. publ. Brigitte Jansen, Research Center Biotechnology and Law, EUROACAD

Iceland: Highcourt decission Dr.phil. Dr. rer. publ. Brigitte Jansen, Research Center Biotechnology and Law, EUROACAD

DeCode 1996: found 1997: submitted the idea of a biobank 1998: the Health Sector Database Act was passed by the Icelandic parliament on 17 December, 1998 October 1998, as an opposition to the Icelandic genebank, the organisation Mannvernd Dr.phil. Dr. rer. publ. Brigitte Jansen, Research Center Biotechnology and Law, EUROACAD

The idea was to utilize the already existing medical and genealogical records of all Icelanders and combine this information with the genetic information gained from tissue samples of the entire population Dr.phil. Dr. rer. publ. Brigitte Jansen, Research Center Biotechnology and Law, EUROACAD