Genetics Research and Pharmacogenetics
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Genetics Research and Pharmacogenetics

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  • The Human Genome project was a stunning achievement - the biomedical equivalent of putting a man on the moon. Impressive, expensive but not in itself useful. However, the insight gained will be invaluable and the technological developments will also have general application (like Teflon).
  • The epidemiological challenge is to use the insight and technology that has come from the Human Genome project and apply it to the study of health and illness in real populations. In fact, all around the world, epidemiologists faced with this challenge are coming up with projects that look a lot like the UK Biobank. As it happens we got there first and we are particularly well placed in the UK to do this work.

Genetics Research and Pharmacogenetics Genetics Research and Pharmacogenetics Presentation Transcript

  • Consent and confidentiality issues in genetic research
    • Genetic research is increasingly the norm
    • Genetic research raises new issues
    • Public understanding is limited but support is widespread
    • Informed consent raises special challenges
    • Harm must be avoided by providing additional safeguards
  • The “New Genetics”
  • The post-genome challenge
    • “We should be interested in humanity’s genes rather than the human genome, moving from the individual towards the population”
    • Sydney Brenner
  • 20th Century knowledge: Smoking causes lung cancer Genome sequences 21st Century question: Which HRT users will develop breast cancer and why?
  • Informed consent in genetic research is problematic
    • Public awareness and understanding of genetics is weak
    • Nature of genetic information is different
      • Shared with relatives
      • Permanent
      • Predictive
      • Highly personal / identity / secular soul
    • Impossible to foresee uses
  • Potential harms from genetic research?
    • Genetic discrimination and stigmatisation
    • Commercial exploitation
    • Reductionist models of health predominate
    • Lack of respect for values and traditions of groups
    • Inadequate engagement with the public by the scientific community
    • Source = HUGO 1996
  • 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
  • Key issues in confidentiality for genetic research
    • Holding information on identified relatives
    • Insurance company access
    • Police access
    • Privacy protection when releasing “anonymous” data to others for research
    • Nature of withdrawal – different levels
  • The national resource of large long-term cohort studies * has or is about to collect DNA (*) has applied for funding to collect DNA Source = M. Wadsworth
  • The UK Biobank will
    • follow the health of a large group of volunteers for many years
    • collect information on environmental and lifestyle factors
    • link these to medical records and stored biological samples
    • samples can be used for biochemical and genetic analysis
  • Liquid nitrogen storage facility
  • Ethics and Governance
    • Public consultation early and continuing
    • Interim Advisory Group established
    • Draft Ethics and Governance Framework published last year
    • Independent Ethics and Governance Council to be appointed
  • Public Consultation Conclusions
        • Proposal accepted in principle
        • Broad acceptance of use of material for
        • medical research
        • Misinformation and misunderstanding
        • of genetics research
        • Consent is crucial
        • Communication is essential
        • Public ownership important
  • Ethics and Governance Framework: the issues (1)
    • Recruitment
    • Consent and understanding
    • Feedback of data to participants
    • Re-contact
    • Withdrawal
    • Incapacity and death
    • Expectation of personal financial gain
  • Ethics and Governance Framework: the issues (2)
    • Stewardship of data and samples
    • Research access to data and samples
    • Licences
    • Sharing of benefits
    • Management and accountability
    • External Governance
  • UK Biobank Ethics and Governance Framework
    • Volunteers can withdraw at anytime
    • Data security + confidentiality assured
    • Samples not released to others
    • Full access for appropriate purposes
    • Internal and external review of science and ethics
    • Independent Ethics and Governance Council
  • Consent and confidentiality issues in genetic research
    • Genetic research is increasingly the norm
    • Genetic research raises new issues
    • Public understanding is limited but support is widespread
    • Informed consent raises special challenges
    • Harm must be avoided by providing additional safeguards