Policy, Ethics and Life Sciences Research Centre

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Policy, Ethics and Life Sciences Research Centre
Improving Involvement and Balancing Risks
workshop. Facilitator Simon Woods
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Outline Questions to consider

• How do we improve participant involvement?
• What are the risks of participant empowerment?
• How can risks to participant involvement be
  managed?
• How are the rights, dignity, safety and welfare
  of participants preserved?

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The moral claim

• Participant involvement like motherhood and
  apple-pie
• Why equality, fairness, respect for autonomy,
  acknowledge rights and interests not a priori
  a good thing
• in a publicly funded health care system it is
  reasonable to expect citizens to be involved in
  research

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Thoughts

• Who is setting the involvement agenda?
• Involvement in what?
• Research
• Research review
• Researchers involving participants
• Participants setting the agenda

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Science and society

• Public understanding of science
• 1950s and nuclear power, GMOs, Stem Cells
• Us and them, expert and lay
• Which publics, whose expertise?
• Co-inquiry

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Outline Questions to consider

• How do we improve participant involvement?
• What are the risks of participant empowerment?
• How can risks to participant involvement be
  managed?
• How are the rights, dignity, safety and welfare
  of participants preserved?

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Ethical Issues
Clinton to issue Tuskegee apology
                                                  

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Ethical issues

• Duty of care
• Helsinki
• Vulnerability
• Informed consent
• Therapeutic misconception
• Confidentiality
• Fairness
• Responsibility

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Biological Citizenship

• Shift from compliant patient-hood (Rose and Novas
  2003)
• Managing ones own health
• Genomics
• Political economy of hope (Novas 2001)
• Bio-value (Waldby 2001)
• Bio-prospecting
• Bio-banks, Cord-blood

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Case TREAT-NMD

• EC FP6 Network of excellence
• Acceleration of translational research for
  neuromuscular diseases
• Collaboration between scientists, clinicians,
  patient groups and industry
• AFM partnership model (Rabeharisoa 2003)
• SMA standards of care
• Pressure group
• Cures now!
• Children and clinical trials
• wed already made up our minds

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Closing thoughts

• Democratisation
• Politics and ethics
• Fairness
• Not all cases/contexts the same
• Vulnerability
• Ethical responsibility
• Different ethical model?
• Citizen not consumer?

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Thank you