The Public Shaping of Medical Research: Patient Associations, Health Movements and Biomedicine

ISBN-13: 9780367341411 / Angielski / Miękka / 2019 / 290 str.

Peter Wehling; Willy Viehover; Sophia Koenen

Opis

Patient organizations and social health movements offer an illuminating example of civil society engagement and participation in scientific research.

Spis treści

Introduction: Patient Associations, Health Social Movements and the Public Shaping of Biomedical Research: An Introduction  Part 1: Empirical Cases and Theoretical Perspectives  1. A Seat at the Table, "a Lab of Our Own" and Working with What We Know Now: How the U.S. Environmental Breast Cancer Movement Shapes Research  2. Initiating and Funding Medical Research on a Rare Disease: The Approach of the German Cystic Fibrosis Association  3. EURORDIS: Empowering Patients Living with Rare Diseases to Participate in Biomedical Knowledge Production  4. The Entanglement of Scientific and Political Claims: Towards a New Form of Patients’ Activism  5. Obesity, the Alternative Food Movement, and Complete Streets: New Forms of ‘Patient’ Activism and the Evolution of Health Social Movements  Part 2: Shifting Contexts and New Challenges  6. Autism, the Internet and Medicalization  7. A Community Fractured: Canada’s Breast Cancer Movement, Pharmaceutical Company Funding, and Science-Related Advocacy  8. Beyond Scientific Controversies: Scientific Counterpublics, Countervailing Industries, and Undone Science  9. Interpellating Patients as Future Users of Biomedical Technologies: The Case of Patient Associations and Stem Cell Research  10. Patient Organizations as Biosocial Communities? Conceptual Clarifications and Critical Remarks  Part 3: Democratizing Biomedicine? The Role of Patient Associations and Health Social Movements  11. Changing Contexts for Science and Society Interaction: From Deficit to Dialogue, from Dialogue to Participation- and beyond?  12. The Virtues (and Some Perils) of Activist Participation: The Political and Epistemic Legitimacy of Patient Activism  13. The Ethical Legitimacy of Patient Organizations’ Involvement in Politics and Knowledge Production: Epistemic Justice as a Conceptual Basis  14. Conclusion: Effects of and Challenges to the Public Shaping of Medical Research