Precision Medicine and Distributive Justice

Precision Medicine and Distributive Justice

Author: Leonard M. Fleck

Publisher: Oxford University Press

Published: 2022

Total Pages: 433

ISBN-13: 0197647723

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Metastatic cancer and costly precision medicines generate extremely complex problems of health care justice. Targeted cancer therapies yield only very marginal gains in life expectancy for most patients at very great cost, thereby threatening the just allocation of limited health care resources. Philosophers have high hopes for the utility of their theories of justice in addressing the challenges of resource allocation; however, none of these theories can address adequately the "wicked" ethical problems that have resulted from these targeted therapies. What we need instead, bioethicist Leonard M. Fleck argues, is a political conception of health care justice, following Rawls, and a fair and inclusive process of rational democratic deliberation governed by public reason. His account makes the basic assumption that we have only limited health care resources to meet unlimited health care needs generated by emerging medical technologies. The primary ethical and political virtue of rational democratic deliberation is that it allows citizens to fashion autonomously shared understandings of how to fairly address the complex problems of health care justice generated by precision medicine. While ideally just outcomes are a moral and political impossibility, "wicked" problems can metastasize if rationing decisions are made invisibly--in ways effectively hidden from those affected by those decisions. As Fleck demonstrates, a fair and inclusive process of democratic deliberation could make these "wicked" problems visible, and subject, to public reason.


Progress and Challenges in Precision Medicine

Progress and Challenges in Precision Medicine

Author: Mukesh Verma

Publisher: Academic Press

Published: 2016-12-22

Total Pages: 346

ISBN-13: 0128095024

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Progress and Challenges in Precision Medicine presents an insightful overview to the myriad factors of personalized and precision medicine. The availability of the human genome, large amounts of data on individual genetic variations, environmental interactions, influence of lifestyle, and cutting-edge tools and technologies for big-data analysis have led to the age of personalized and precision medicine. Bringing together a global range of experts on precision medicine, this book collects previously scattered information into one concise volume which covers the most important developments so far in precision medicine and also suggests the most likely avenues for future development. The book includes clinical information, informatics, public policy implications, and information on case studies. It is a useful reference and background work for students, researchers, and clinicians working in the biomedical and medical fields, as well as policymakers in the health sciences. - Provides an overview of the growing field of precision medicine - Contains chapters from geographically diverse experts in their field - Explores important aspects of precision medicine, including applications, ethics, and development


The Postgenomic Condition

The Postgenomic Condition

Author: Jenny Reardon

Publisher: University of Chicago Press

Published: 2017-12-29

Total Pages: 320

ISBN-13: 022651045X

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The postgenomic condition: an introduction -- The information of life or the life of information? -- Inclusion: can genomics be antiracist? -- Who represents the human genome? What is the human genome? -- Genomics for the people or the rise of the machines? -- Genomics for the 98 percent? -- The genomic open 2.0: the public v. the public -- Life on Third: knowledge and justice after the genome -- Epilogue


Personalized Medicine in Healthcare Systems

Personalized Medicine in Healthcare Systems

Author: Nada Bodiroga-Vukobrat

Publisher: Springer

Published: 2019-08-02

Total Pages: 405

ISBN-13: 3030164659

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This book gathers scientific contributions on comprehensive approaches to personalized medicine. In a systematic and clear manner, it provides extensive information on the methodological, technological, and clinical aspects of high-throughput analytics, nanotechnology approaches, microbiota/human interactions, in-vitro fertilization and preimplantation, and various diseases like cancer.Moreover, the book analyzes the social and legal aspects of social security systems, healthcare systems and EU law – e.g. the role of solidarity, regulatory possibilities and obstacles, justice and equality, privacy/disclosure of data, and the right to know – from an interdisciplinary perspective. Lastly, it explores the economical and ethical context in the fields of business models, intellectual property issues, the patient/physician relationship, and price discrimination.


Just Caring

Just Caring

Author: Leonard M. Fleck

Publisher: Oxford University Press

Published: 2009

Total Pages: 479

ISBN-13: 0195128044

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What does it mean to be a "just" and "caring" society when we have only limited resources to meet unlimited health care needs? Do we believe that all lives are of equal value? Is human life priceless? Should a "just" and "caring" society refuse to put limits on health care spending? In Just Caring, Leonard Fleck reflects on the central moral and political challenges of health reform today. He cites the millions of Americans who go without health insurance, thousands of whom die prematurely, unable to afford the health care needed to save their lives. Fleck considers these deaths as contrary to our deepest social values, and makes a case for the necessity of health care rationing decisions. The core argument of this book is that no one has a moral right to impose rationing decisions on others if they are unwilling to impose those same rationing decisions on themselves in the same medical circumstances. Fleck argues we can make health care rationing fair, in ways that are mutually respectful, if we engage in honest rational democratic deliberation. Such civic engagement is rare in our society, but the alternative is endless destructive social controversy that is neither just nor caring.


Beyond Bioethics

Beyond Bioethics

Author: Osagie K. Obasogie

Publisher: Univ of California Press

Published: 2018-03-13

Total Pages: 546

ISBN-13: 0520277821

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"For several decades, the field of bioethics has played a dominant role in shaping the way society thinks about ethical problems related to developments in science, technology, and medicine. But its traditional emphases on, for example, doctor-patient relationships, informed consent, and individual autonomy have led the field to not be fully responsive to the challenges posed by new human biotechnologies such as assisted reproduction, human genetic enhancement, and DNA forensics. Beyond Bioethics provides a focused overview for students and others grappling with the profound social dilemmas posed by these developments. It brings together the work of cutting-edge thinkers from diverse fields of study and public engagement, all of them committed to a new perspective that is grounded in social justice and public interest values. The contributors to this volume seek to define an emerging field of scholarly, policy, and public concern: a new biopolitics."--Provided by publisher.


GDPR and Biobanking

GDPR and Biobanking

Author: Jane Reichel

Publisher: Springer Nature

Published: 2021

Total Pages: 432

ISBN-13: 3030493881

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Part I Setting the scene -- Introduction: Individual rights, the public interest and biobank research 4000 (8) -- Genetic data and privacy protection -- Part II GDPR and European responses -- Biobank governance and the impact of the GDPR on the regulation of biobank research -- Controller' and processor's responsibilities in biobank research under GDPR -- Individual rights in biobank research under GDPR -- Safeguards and derogations relating to processing for archiving purposes in the scientific purposes: Article 89 analysis for biobank research -- A Pan-European analysis of Article 89 implementation and national biobank research regulations -- EEA, Switzerland analysis of GDPR requirements and national biobank research regulations -- Part III National insights in biobank regulatory frameworks -- Selected 10-15 countries for reports: Germany -- Greece -- France -- Finland -- Sweden -- United Kingdom -- Part IV Conclusions -- Reflections on individual rights, the public interest and biobank research, ramifications and ways forward. .


Personalized Medicine

Personalized Medicine

Author: Barbara Prainsack

Publisher: NYU Press

Published: 2017-12-19

Total Pages: 287

ISBN-13: 1479856908

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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.


Precision Cancer Medicine

Precision Cancer Medicine

Author: Sameek Roychowdhury

Publisher: Springer Nature

Published: 2020-01-02

Total Pages: 196

ISBN-13: 3030236374

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Genomic sequencing technologies have augmented the classification of cancer beyond tissue of origin and towards a molecular taxonomy of cancer. This has created opportunities to guide treatment decisions for individual patients with cancer based on their cancer’s unique molecular characteristics, also known as precision cancer medicine. The purpose of this text will be to describe the contribution and need for multiple disciplines working together to deliver precision cancer medicine. This entails a multi-disciplinary approach across fields including molecular pathology, computational biology, clinical oncology, cancer biology, drug development, genetics, immunology, and bioethics. Thus, we have outlined a current text on each of these fields as they work together to overcome various challenges and create opportunities to deliver precision cancer medicine. As trainees and junior faculty enter their respective fields, this text will provide a framework for understanding the role and responsibility for each specialist to contribute to this team science approach.