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Dr Chris Willmott Dept of Biochemistry, University of Leicester  [email_address] Book Review : Rethinking Informed Consent In Bioethics Neil Manson and Onora O’Neill Social Science Group University  of Leicester
About the authors  Baroness Onora O’Neill Chair of Nuffield Foundation Professor of Philosophy, Cambridge Kantian framework Trust and Autonomy Neil Manson Senior Lecturer, Dept of Philosophy University of Lancaster Ethics of communication Virtues of not knowing
Necessity of Informed Consent Consent = Safeguard against paternalism Protecting individuals from harm Respecting individual autonomy
Necessity of Informed Consent “ Appeals to informed consent and its role on    justifying clinical and research practice are now so    well entrenched that their presence, indeed their    necessity, and their justification are rarely    questioned… ” (p2)
BUT: “… the quest for wider scope, for higher standards,    for better justifications and for regulatory    reinforcement, which aimed to make consent the    lynchpin of biomedical ethics, has created    intractable problems .” (p2) Necessity of Informed Consent?
Informed Consent: Problems?  ,[object Object],[object Object],[object Object]
Informed Consent: Problems?  ,[object Object],[object Object],[object Object]
Informed Consent: Problems?  ,[object Object],[object Object],[object Object],[object Object],[object Object]
Informed Consent: Problems?  ,[object Object]
What exactly IS Autonomy?  ,[object Object],[object Object],[object Object]
What exactly IS Autonomy?  ,[object Object]
What exactly IS Autonomy?  ,[object Object],[object Object],[object Object],[object Object],[object Object]
How to deal with the problems  ,[object Object],[object Object],[object Object],[object Object]
The importance of metaphor  ,[object Object],[object Object],[object Object],[object Object]
Aspects obscured by this metaphor  ,[object Object],[object Object],[object Object],[object Object]
Aspects obscured by this metaphor  ,[object Object],[object Object],[object Object],[object Object]
An alternative model: Agency  ,[object Object],[object Object],[object Object]
An alternative model: Agency  ,[object Object]
Informed Consent as a ‘Waiver’  ,[object Object],[object Object],[object Object]
Informed Consent as a ‘Waiver’  ,[object Object],[object Object],[object Object]
Successful Consent transactions  ,[object Object],[object Object],[object Object],[object Object],[object Object]
Successful Consent transactions  ,[object Object],[object Object]
Communicating for consent  ,[object Object],[object Object],[object Object],[object Object]
Informational privacy  ,[object Object],[object Object],[object Object]
Informational privacy  Four distinctions: Agency   v  Conduit/container Transaction   v  Content Confidentiality  v  Data protection Communication  ≠ Acquisition/possession
Focus on content...  ,[object Object],[object Object]
Focus on content...  ,[object Object]
Strictly between you and me, X is really struggling to cope at the moment Hard to ‘unknow’ something The programme for the autumn series of seminars is available I notice that X is no longer listed to speak, is this a mistake? By the way, do you realise the message you just sent went to the whole list Earlier today an e-mail was inadvertently sent to this discussion list. Please delete this message immediately
Focus on content...  ,[object Object]
Focus on content...  ,[object Object],[object Object],[object Object]
Agency model  ,[object Object],[object Object]
Second-order Info Obligations  ,[object Object],[object Object],[object Object],[object Object],[object Object]
Data Protection Act  ,[object Object],[object Object],[object Object],[object Object],[object Object]
Consent, DPA & Medical Research  ,[object Object],[object Object],[object Object],[object Object]
Consent, DPA & Medical Research  ,[object Object],[object Object],[object Object]
Consent, DPA & Medical Research  ,[object Object]
Recap  ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]
Data protection?  ,[object Object],[object Object]
Confidentiality: a better model? ,[object Object],[object Object]
Confidentiality: a better model? ,[object Object],[object Object]
Confidentiality: a better model? ,[object Object],[object Object]
Confidentiality: a better model? ,[object Object]
Genetic information  ,[object Object],[object Object]
Consent and Trust  ,[object Object],[object Object],[object Object]
Trust and Trustworthiness  ,[object Object],[object Object],[object Object],[object Object]
Trust and Trustworthiness  ,[object Object],[object Object],[object Object],[object Object]
Trust and Accountability  ,[object Object],[object Object],[object Object],[object Object]
Trust and Accountability  ,[object Object],[object Object],[object Object],[object Object]
Managerial v Professional  ,[object Object],[object Object],[object Object],[object Object],[object Object]
Management ≠ Accountability  ,[object Object],[object Object],[object Object],[object Object],[object Object]
Rethinking    Change?  ,[object Object],[object Object],[object Object],[object Object],[object Object]
Rethinking    Change?  ,[object Object],[object Object],[object Object]
Rethinking    Change?  ,[object Object],[object Object],[object Object]
Final take-home message “ We hope that the juggernaut of    informed consent requirements    that has been constructed across    the last fifty years will be    reformed and reduced within    a far shorter period”  (p200)

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Rethinking Informed Consent (Review)

  • 1. Dr Chris Willmott Dept of Biochemistry, University of Leicester [email_address] Book Review : Rethinking Informed Consent In Bioethics Neil Manson and Onora O’Neill Social Science Group University of Leicester
  • 2. About the authors Baroness Onora O’Neill Chair of Nuffield Foundation Professor of Philosophy, Cambridge Kantian framework Trust and Autonomy Neil Manson Senior Lecturer, Dept of Philosophy University of Lancaster Ethics of communication Virtues of not knowing
  • 3. Necessity of Informed Consent Consent = Safeguard against paternalism Protecting individuals from harm Respecting individual autonomy
  • 4. Necessity of Informed Consent “ Appeals to informed consent and its role on justifying clinical and research practice are now so well entrenched that their presence, indeed their necessity, and their justification are rarely questioned… ” (p2)
  • 5. BUT: “… the quest for wider scope, for higher standards, for better justifications and for regulatory reinforcement, which aimed to make consent the lynchpin of biomedical ethics, has created intractable problems .” (p2) Necessity of Informed Consent?
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  • 25. Informational privacy Four distinctions: Agency v Conduit/container Transaction v Content Confidentiality v Data protection Communication ≠ Acquisition/possession
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  • 28. Strictly between you and me, X is really struggling to cope at the moment Hard to ‘unknow’ something The programme for the autumn series of seminars is available I notice that X is no longer listed to speak, is this a mistake? By the way, do you realise the message you just sent went to the whole list Earlier today an e-mail was inadvertently sent to this discussion list. Please delete this message immediately
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  • 54. Final take-home message “ We hope that the juggernaut of informed consent requirements that has been constructed across the last fifty years will be reformed and reduced within a far shorter period” (p200)