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Human Biobanks: Towards a Global Ethical Framework Agomoni Ganguli Institute of Biomedical Ethics University of Zürich Jakarta,

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Presentation on theme: "Human Biobanks: Towards a Global Ethical Framework Agomoni Ganguli Institute of Biomedical Ethics University of Zürich Jakarta,"— Presentation transcript:

1 Human Biobanks: Towards a Global Ethical Framework Agomoni Ganguli Institute of Biomedical Ethics University of Zürich 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 1.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 1.Repository established to study a particular genetic disorder, collaborative study 2.Genetic database of the entire population of a country 3.Biotech company approaching indigenous population for samples to be used in pharmacogenetic studies 4.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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