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Human Biobanks

Human Biobanks. Dr. phil. Dr. rer. publ. Brigitte Jansen. Genetic databases: Population Information Data Basis Technical remarks Exchanging Health Information Structure UK – Biobank (workflow) Exchanging Health Information Iceland. Genetic databases: Population. Iceland’s Decode,

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Human Biobanks

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

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

  3. 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

  4. 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

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

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

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

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

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

  10. 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

  11. 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

  12. 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

  13. 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

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

  15. 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

  16. 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

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