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Human Biobanks: Towards a Global Ethical Framework

Human Biobanks: Towards a Global Ethical Framework. Agomoni Ganguli Institute of Biomedical Ethics University of Zürich ganguli@ethik.unizh.ch Jakarta, 29 November 2005. Background. New era of genomics: boom of biobanks Existing biobanking guidelines: contradictory or inconclusive

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Human Biobanks: Towards a Global Ethical Framework

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  1. Human Biobanks: Towards a Global Ethical Framework Agomoni Ganguli Institute of Biomedical Ethics University of Zürich ganguli@ethik.unizh.ch Jakarta, 29 November 2005

  2. Background • New era of genomics: boom of biobanks • Existing biobanking guidelines: contradictory or inconclusive A 2 year qualitative research project investigating the conditions under which biobanks may be established, maintained and used in ethically acceptable ways

  3. Team Members Alex Capron: WHO Alex Mauron, Bernice Elger, Andrea Boggio: University of Geneva Nikola Biller-Andorno: University of Zürich

  4. Methodology • Comparative Analysis of Guidelines 2. Drafting 4 vignettes as basis for semi-structured, one-to-one interviews 3. Over 4O respondents world-wide

  5. Vignettes • Repository established to study a particular genetic disorder, collaborative study • Genetic database of the entire population of a country • Biotech company approaching indigenous population for samples to be used in pharmacogenetic studies • University hospital storing samples from patients for further research

  6. Preliminary Results • Preliminary analysis of interview results: systematic analysis being developed • Responses influenced by various factors (cultural, professional, education, policy-making) • Nine interviews: India, Hong Kong, Japan, Taiwan

  7. Consent for Subsequent Uses • Broad consent is favoured if possible uses mentioned in consent form • Re-consenting seen as impractical and sometimes unethical

  8. Feedback • Feedback mechanism should exist But: - Right no to know - Percentage risk difficult to communicate (Japan, India, Taiwan) - Feedback is dangerous without proper counselling (India)

  9. Circulation of Samples • Two main positions here: MTA restriction acceptable 1) Territorial limitation unacceptable “common good/heritage of humanity” 2) Territorial limitation acceptable e.g. India “belongs to the nation” Fees: public good versus profit-making

  10. Benefit Sharing and Community Consent • “Benefits must be beneficial to the whole group” • Sharing IP rights is impractical • Community consent vs. Individual consent: - Individual consent important - Community consent is essential

  11. Thank You!

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