Personalized Medicine

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.

Barbara Prainsack is Professor for Comparative Policy Analysis at the University of Vienna. She is the author of Personalized Medicine: Empowered Patients in the 21st Century, co-author of Genetic Suspects: Global Governance of Forensic DNA Profiling and Databasing and Solidarity in Bioethics and Beyond, and co-editor of several volumes.Barbara Prainsack is Professor for Comparative Policy Analysis at the University of Vienna. She is the author of Personalized Medicine: Empowered Patients in the 21st Century, co-author of Genetic Suspects: Global Governance of Forensic DNA Profiling and Databasing and Solidarity in Bioethics and Beyond, and co-editor of several volumes.

It is apparent from what Prainsack writes elsewhere in her clear and powerful analysis that we need to attend to these mushrooming responsibilities for being engaged and empowered with and by our data and how social and economic inequalities differentiate who is able or required to enact these responsibilities and benefit from the choices that they invokePrainsack provides us with an invaluable guide to set us off in the right direction along this path.

Adele E. Clarke,Co-author of Biomedicalization:
Prainsack accessibly unpacks the complexities of & patient-centered personalized medicine, revealing startling redistributions of responsibility, diagnostic capacities, costs and profits. Providers lose autonomy as & algorhythmically supported diagnoses and care based on & health maps displace clinical judgement. Patients awash in information are increasingly responsible, and high costs make such care impossible for most. Prainsack envisions a personalized medicine for all the people, not for profit.

Frank Pasquale,Author of The Black Box Society: The Secret Algorithms that Control Money and Information:
Barbara Prainsack raises deep questions about the ethics and politics of personalized medicine. In this rigorous and engaging book, she explores the cutting edge of health care, critiques several popular visions of patient empowerment, and offers a novel and compelling account of what truly democratic, responsive, and fair deployment of new health technologies would require. Displaying a mastery of diverse literatures in social science, law, and health services research, Personalized Medicine is a must-read for anyone interested in the future of patient participation in health and wellness initiativesranging from self-tracking to biohacking, and well beyond.

Prainsacks 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.

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.

Hastings Center Report:
In Personalized Medicine, Prainsack brings together a ton of recent research—much of it her own—using a variety of methodologies to study a wide range of topics. (Two thirds of her nearly seven hundred sources were published since 2010.) Prainsack states very clearly at the outset of a chapter what she is going to do and, at the end, what she has done.