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.
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