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International workshop: "Rethinking Cystic Fibrosis Screening Rationales in the Era of Novel Therapies"

On 1st July an international workshop, entitled: ‘Rethinking Cystic Fibrosis Screening Rationales in the Era of Novel Therapies’, will take place at the Institute for Ethics and History of Health in Society. 

This workshop is part of the DFG-funded project “Genetic testing and/or screening for cystic fibrosis in Israel and Germany: The interplay of policies and socio-ethical considerations” (project no. 529272624).

Organisers: Ruth Horn (PI, University of Augsburg), Tamar Nov-Klaiman (University of Augsburg), Aviad Raz (PI, Ben Gurion University of the Negev)

Venue: Institute for Ethics and History of Health in Society, IEHHS, Gutenbergstr. 7, Building A, 1st level, 86356 Neusäß

A limited number of places is available for additional participants. If you are interested, please contact elisabeth.schroeder@med.uni-augsburg.de by 15th June. 

 

Programme:

 

09:30-10:00       Coffee/Tea

Opening

10:00-10:10       Welcome (Ruth Horn, University of Augsburg; Aviad Raz, Ben-Gurion University)

10:10-10:30       Introductory Rounds (all)

10:30-11:00       Modulating expectations: How new therapies influence preferences for cystic fibrosis screening in Germany and Israel (Tamar Nov-Klaiman, University of Augsburg)

 

  1. Screening policies – aims, practice, benefits and challenges (Chair: Aviad Raz)

11:00-11:20       When new therapies challenge and transform the rationales of carrier, prenatal, and newborn screening (Lidewij Henneman, Amsterdam University Medical Center)

11:20-11:40       Newborn screening in Germany: general overview and details on cystic fibrosis screening (Friederike Hörster, University of Heidelberg)

11:40-12:00       CF after 25 years of genetic carrier screening in Israel: a new era?! (Amihood Singer, Israeli ministry of health)

12:00-12:20       Joint discussion

 

12:20-13:30       Lunch

 

  1. Patient organisations and stakeholders’ views on screening strategies – the impact of modulators (Chair: Kelly Ormond, ETH Zurich)

13:30-13:50     From fatal to manageable: how therapeutic advances reshape genetic screening perspectives in Germany (Stephan Kruip, CF Association of Germany)

13:50-14:10      Carrier screening, absence of newborn screening, and modulators therapy: insights from the Israeli experience (Ori Inbar, CF Association of Israel)

14:10-14:30      Joint discussion

 

  1. The social, legal and ethical perspectives on prenatal screening (Chair: Ruth Horn)

14:30-14:50       Unpacking the notion of 'serious' genetic conditions: towards implementation in reproductive decision-making and the economic angle? (Felicity Boardman, University of Warwick)  [online]  

14:50-15:10       Selecting against or for disability: implications for CF (Sagit Mor, University of Haifa)

15:10-15:30       Joint discussion

15:30-15:45       Closing remarks and farewell (Ruth Horn and Aviad Raz)

 

 

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