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    STUDIA BIOETHICA - Issue no. Special Issue / 2021  
         
  Article:   ADDRESSING THE EVIDENCE GAP IN MEDICATION FOR PREGNANT WOMEN: THE NEED FOR MORE SOLIDARITY?.

Authors:  MARIEKE HOLLESTELLE, RIEKE VAN DER GRAAF, MIRIAM STURKENBOOM, HANS VAN DELDEN.
 
       
         
  Abstract:  
DOI: 10.24193/subbbioethica.2021.spiss.55

Published Online: 2021-06-30
Published Print: 2021-06-30
pp.90


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ABSTRACT: Parallel Session III, Room 3 Although the inclusion of pregnant women in clinical research has been widely promoted over the last decade, there is still a lack of evidence-based knowledge concerning risk and efficacy of medications used for obstetric and non-obstetric illnesses. It has been argued that solidarity is of key importance in changing the status quo for the group of rare disease patients, for whom, just like pregnant women, a poor evidence-base exists regarding treatments. Therefore, we explore the potential role of solidarity in changing the status quo in the field of pregnant women. By way of an in-depth analysis of the concept of solidarity developed by Barbara Prainsack and Alena Buyx, we assess the role of solidarity in the group of rare disease patients and apply the conditions for solidarity to the group of pregnant women. From this analysis, we derive three lessons for the group of pregnant women: 1) being able to self-organize can have a significant effect on the ability to demand change, 2) organizing and action can be triggered by commonalities, such as shared experiences 3) enabling change involves enacted commitments to accept a cost to assist others with whom one recognizes a similarity in a relevant respect. In this presentation, we argue that an active involvement of pregnant women described as an act of solidarity should be stimulated. With that, engagement and solidarity from other stakeholders involved are necessary to raise awareness about the shared experiences of pregnant women and to realize the infrastructure for active involvement.
 
         
     
         
         
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