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Beyond Thalidomide: The Patient as an Agent of Change

Project description

Patient engagement with drug-related disabilities since the 1960s

Since 1960, patients have been involved in antenatal drug use, prompting urgent political and scientific discussions. This involvement has sparked conflicts among experts from both the Global South and North, including regions such as Latin America, Central Africa, India, and Europe. These interactions have driven advancements in reproductive health approaches, addressing democratic and civil challenges beyond traditional expert-led risk management. The ERC-funded BT project will examine how patient engagement with drug-related disabilities has evolved since the 1960s, reshaping concepts of reproductive health. It will analyse patient involvement in antenatal drug use and its political and scientific implications, focusing on monitoring birth defect factors, managing antenatal drug risks, marketing pharmaceuticals, and legal actions.

Objective

Beyond Thalidomide will trace the historical rise of patient engagement with drug related disability through the second half of the twentieth century to understand how a novel empowered group transformed conceptions of (reproductive) health and disease in science and society. The project will map the conditions in which patient became engaged with antenatal drug use, and reconstruct how their action has created political and scientific urgency since 1960. This multifaceted engagement resulted in clashes of expertise that connected actors in the Global South and North, from Latin American countries through Central Africa, India, and Europe, and the enforcement and stabilization of the development of approaches in reproductive health in the light of the democratic and civil societal challenges they pose, beyond traditional accounts of expert-led, iatrogenic risk management.

BT will address these aims trough analysis of four interlinked fields of patient engagement:
1. Monitoring, and the surveillance of exogenous factors for birth defects
2. Prevention, and the management of risks of antenatal drug use in health care systems
3. Marketing, and the making of pharmaceutical products
4. Legal Action, and court intervention
Mapping these fields of acting, BT will create an ambitious digital collection of patient life stories and a comprehensive integrated record of how patients engage. BT will, or the first time, deliver a global history of drug related disability from below, which examines the shifting contours of patients as actors. This project takes a ground-breaking approach to the historiography of reproductive health, combining high-impact global case studies with innovative research tools to explore the political, ethical and social challenges of this alternative perspective.

Fields of science (EuroSciVoc)

Keywords

Programme(s)

Topic(s)

Funding Scheme

HORIZON-ERC - HORIZON ERC Grants

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Call for proposal

(opens in new window) ERC-2023-STG

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Host institution

UNIVERSITAT WIEN
Net EU contribution
€ 1 499 743,00
Address
UNIVERSITATSRING 1
1010 Wien
Austria
Region
Ostösterreich Wien Wien
Activity type
Higher or Secondary Education Establishments
Links
Total cost
€ 1 499 743,00

Beneficiaries (1)