Navigation auf uzh.ch
Navigation auf uzh.ch
If you wish to participate in the conference via Zoom, please send an email to Denise Hafen Hauri (sekretariat@sozethik.uzh.ch) or to Nina Streeck (nina.streeck@uzh.ch).
Download program: Ethics_Conference_final_program (PDF, 1 MB)
Thursday, 15 June University of Zurich, Rämistrasse 71, KOL-H-317
12:00 Arrival & Lunch Bag
12:30 Welcome & Introduction
12:45 Rachel Grob (University of Wisconsin): Diagnostic information and uncertainty in the newborn period: qualitative dimensions of families’ experiences with novel technologies
13:45 Bernice Elger (University of Basel): Genetic testing of children: Child welfare versus parental autonomy
14:45 Coffee Break
Parallel sessions: KOL-H320/KOL-H-321/KOL-H-322
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15:15
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Sebastian Wäscher (University of Zurich) The burden of rare diseases. Patient narratives on managing their disease
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Danielle Pacia (Hastings Center) Individualized genetic therapies as a treatment-research hybris
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Susanne Wehrli (University of Zurich) Access to healthcare among Swiss adults with rare diseases – the influence of facilitating and inhibiting individual factors
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16:00
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Lainie Friedman Ross (University of Rochester) Thinking zebras not horses when the herd runs past: Atypical Diabetes Mellitus
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Urte Laukaityte (UC Berkeley) Rare diseases in the context of effective altruism
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Jacopo Morelli (University of Modena-Reggio) Kantian constructivism applied to rare diseases
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16:45 Coffee Break
17:00 Deborah Mascalzoni (Uppsala University): Respecting the rights of children with rare disease in research within their lifespan: challenges and perspectives
18:00 Eva Winkler (University of Heidelberg): Data use for research in rare disease. Ethical considerations on the governance of data initiatives
19:00 End
19:30 Dinner
Friday, 16 June University of Zurich, Rämistrasse 71, KOL-H-317
9:00 Marcello Ienca (Technical University of Munich and Ecole Polytechnique Fédérale de Lausanne EPFL): Patient-engagement in rare disease research. The case study of rare neurological diseases
10:00 Dana Mahr (University of Geneva): Citizen science and biomedical research: the experiential knowledge of a lived genome
11:00 Break
Parallel sessions: KOL-H320/KOL-H-321/KOL-H-322
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11:30
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Lucie Perillat (University of Toronto) Rare diseases: a universal priority
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Francesca Greco (Insubria University) Understanding orphan drugs: roles and perspectives regarding orphan drugs for rare diseases
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12:15
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Nina Streeck (University of Zurich) The vulnerable orphans: Does vulnerability constitute a right to solidarity?
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Rebeca Méndez-Veras (Universidad Mariano Gálvez de Guatemala) Ethical issues regarding clinical exome and targeted gene sequencing. A Guatemalan experience
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13:00 Lunch Break
14:00 Havi Carel (University of Bristol): Rare diseases, epistemic injustice and the good life
15:00 Heiner Fangerau (University of Duesseldorf): Diagnoses and historical concepts of disease – is the end of a diagnostic odyssey a useful fiction?
16:00 Coffee Break
17:00 Niklas Juth (Uppsala University and Karolinska Institutet): Prioritization of orphan drugs: considerations of ethics and justice
18:00 End
