Personalized Medicine: Empowered Patients in the 21st Century?

Description

Inside today's data-driven personalized medicine, and the time, effort, and information required from patients to make it a reality Medicine has been personal long before the concept of “personalized medicine” became popular. Health professionals have always taken into consideration the individual characteristics of their patients when diagnosing, and treating them. Patients have cared for themselves and for each other, contributed to medical research, and advocated for new treatments. Given this history, why has the notion of personalized medicine gained so much traction at the beginning of the new millennium? Personalized Medicine investigates the recent movement for patients’ involvement in how they are treated, diagnosed, and medicated; a movement that accompanies the increasingly popular idea that people should be proactive, well-informed participants in their own healthcare. While it is often the case that participatory practices in medicine are celebrated as instances of patient empowerment or, alternatively, are dismissed as cases of patient exploitation, Barbara Prainsack challenges these views to illustrate how personalized medicine can give rise to a technology-focused individualism, yet also present new opportunities to strengthen solidarity. Facing the future, this book reveals how medicine informed by digital, quantified, and computable information is already changing the personalization movement, providing a contemporary twist on how medical symptoms or ailments are shared and discussed in society. Bringing together empirical work and critical scholarship from medicine, public health, data governance, bioethics, and digital sociology, Personalized Medicine analyzes the challenges of personalization driven by patient work and data. This compelling volume proposes an understanding that uses novel technological practices to foreground the needs and interests of patients, instead of being ruled by them. Cover......Page 1 PERSONALIZED MEDICINE......Page 2 Title......Page 4 Copyright......Page 5 CONTENTS......Page 6 Preface and Acknowledgments......Page 8 List of Figures, Boxes, and Tables......Page 12 Technical Terms and Acronyms......Page 14 1. Setting the Stage for Personalized Medicine......Page 18 2. The Patient Researcher......Page 32 3. Always On: The Transmitting Patient......Page 63 4. Beyond Empowerment......Page 92 5. Just Profit?......Page 124 6. Beyond Individualism......Page 152 7. The Social Life of Evidence in Personalized Medicine......Page 172 8. Conclusion: Patient Work in the Context of Personalization......Page 204 Notes......Page 226 References......Page 234 Index......Page 276 About the Author......Page 288