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Nov 19, 2023 39 likes •270 views

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

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Reflections on the Regulation of Regenerative Medicine

Timothy Caulfield, Toulouse 2014

@CaulfieldTim

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Normalization

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Translation

Language/expe cations legacy…

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Popular culture: Efficacy assumed.

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Changes tone of debate

Limiting access to effective therapies…

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State of science

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Regulatory change based on bioeconomy enthusiasm (hype)?

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Research

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Oliver, 2011

Reg/policy? … good science?

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Industry & public trust

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Percent Respondents on Different Levels of Trust

Q9. How much do you trust the following individuals, organizations or groups with the care and use of your confidential health

information?

0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%

TRUST

Other research similar results in context of SC - Christine Critchley, 2008

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Normalization/Specia l Policy Tension

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Can scientific community make rules for itself? Self-serving?

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Who do you think owns the samples? Scientist s CBS Law PC Patients Albertans Research Participant 18.5% 51.1% 52.1% 60.0 % 19.4% 25.7% Researcher conducting research 3.7% 13.8% 12.5% 0% 16.3% 23.1% Research Institution 77.8% 30.9% 33.3% 40.0 % 62.2% 44.3% Funder(s) of the research 0% 4.3% 2.1% 0% 2.0% 6.9%

No consensus

Most scientists reported that the research institution owns the samples

Most of the ethics, law & privacy groups reported that the research participant owns the samples

Public divided!

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Social Controversies

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Ship of consensus on a sea of discontent?

Cell/Biobanki ng community

Turner

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Time to deflate the stem cell bubble?

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Thank you!

Ubaka Ogbogu, Robyn Hyde- Lay, Christine Rachul, Maeghan Toews, Marianne Clarke, Kalina Kamenova, Li Du, Nicki Baron and the UofA and HLI team!