Reflections on the Regulation of Regenerative Medicine Timothy Caulfield, Toulouse 2014 @CaulfieldTim
Normalization
Translation Language/expe cations legacy…
Popular culture: Efficacy assumed.
Changes tone of debate Limiting access to effective therapies…
State of science
Regulatory change based on bioeconomy enthusiasm (hype)?
Research
Reg/policy? … good science? Oliver, 2011
Industry & public trust
TRUST Percent Respondents on Different Levels of Trust 100% 90% 80% 70% 60% 50% 40% 30% 20% 10% 0% Other research similar results in context of SC - Christine Critchley, 2008 Q9. How much do you trust the following individuals, organizations or groups with the care and use of your confidential health information? 16
Normalization/Specia l Policy Tension
Self-serving? Can scientific community make rules for itself?
Who do you think owns Scientist CBS Law PC Patients Albertans the samples? s Research Participant 51.1% 52.1% 60.0 18.5% 19.4% 25.7% % Researcher conducting 3.7% 13.8% 12.5% 0% 16.3% 23.1% research Research Institution 30.9% 33.3% 40.0 77.8% 62.2% 44.3% % Most scientists reported that the Funder(s) of the research 0% 4.3% 2.1% 0% 2.0% 6.9% research institution owns the samples Most of the ethics, law & privacy groups reported that the research Public participant owns the samples divided! No consensus 19
Social Controversies
Ship of consensus on a sea of discontent? Cell/Biobanki ng community Turner
Time to deflate the stem cell bubble?
Thank you! Twitter: @CaulfieldTim Ubaka Ogbogu, Robyn Hyde- Lay, Christine Rachul, Maeghan Toews, Marianne Clarke, Kalina Kamenova, Li Du, Nicki Baron and the UofA and HLI team !
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