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.
“Prainsack accessibly unpacks thecomplexities of ‘patient-centered personalized medicine,’ revealing startlingredistributions of responsibility, diagnostic capacities, costs and profits.Providers lose autonomy as ‘algorhythmically supported’ diagnoses and carebased on ‘health maps’ displace clinical judgement. Patients awash ininformation are increasingly responsible, and high costs make such careimpossible for most. Prainsack envisions a personalized medicine for all the people, not for profit.”-Adele E. Clarke,Co-author of Biomedicalization
"Prainsack’s rigorous review and synthesis of evidence on [patient] engagement from the fields of medicine, ethics, social science, technology, informatics, and law is quite compelling and makes this book a unique contribution."-Health Affairs
“Barbara Prainsack raises deep questionsabout the ethics and politics of personalized medicine. In this rigorous andengaging book, she explores the cutting edge of health care, critiques severalpopular visions of patient empowerment, and offers a novel and compelling accountof what truly democratic, responsive, and fair deployment of new healthtechnologies would require. Displaying a mastery of diverse literatures insocial science, law, and health services research, Personalized Medicine is a must-read for anyone interested in thefuture of patient participation in health and wellness initiatives—ranging fromself-tracking to biohacking, and well beyond.”-Frank Pasquale,Author of The Black Box Society: The Secret Algorithms that Control Money and Information
"A thoughtful, thorough, and philosophical discussion of the many possible obstacles to the successful, equitable implementation of personalized medicine and its potential for unintended consequences."-Genome Magazine