Ethics and Privacy Considerations for Systems Biology Applications in Predictive and Personalized Medicine

Ethics and Privacy Considerations for Systems Biology Applications in Predictive and Personalized Medicine

Jake Y. Chen (Indiana Center for Systems Biology and Personalized Medicine, USA, Indiana University, USA & Purdue University, USA), Heng Xu (The Pennsylvania State University, USA), Pan Shi (The Pennsylvania State University, USA), Adam Culbertson (Indiana University, USA) and Eric M. Meslin (Indiana University Center for Bioethics, USA & Indiana University, USA)
Copyright: © 2013 |Pages: 27
DOI: 10.4018/978-1-4666-3604-0.ch071
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Abstract

Integrative analysis and modeling of the omics data using systems biology have led to growing interests in the development of predictive and personalized medicine. Personalized medicine enables future physicians to prescribe the right drug to the right patient at the right dosage, by helping them link each patient’s genotype to their specific disease conditions. This chapter shares technological, ethical, and social perspectives on emerging personalized medicine applications. First, it examines the history and research trends of pharmacogenomics, systems biology, and personalized medicine. Next, it presents bioethical concerns that arise from dealing with the increasing accumulation of biological samples in many biobanking projects today. Lastly, the chapter describes growing concerns over patient privacy when large amount of individuals’ genetic data and clinical data are managed electronically and accessible online.
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Personalized Medicine: The History

While medicine has always been, to some extent, “personalized” (for example, even ancient codes of medical ethics spoke of the ethical expectations of physicians to consider the well being of individual patients (Daikos, 2007), our current preoccupation with personalized medicine evolved from the new capacity to take “trial-and-error” out of the modern drug development process (Naylor & Chen, 2010). Unlike personalized medicine practiced for thousands of years, in which clinical symptoms derived at the physiological level (e.g., pulse rhythms, tongue color, temperature, pain points, and facial characteristics) were used to “personalize” diagnosis and treatment regimen (e.g., compound formulation of herbal medicine), modern personalized medicine seek to incorporate molecular information of the patient into modern medical decision makings. Optimal administration of drugs would be customized for each individual, after his/her unique genetic makeup is retrieved from molecular medical records to be created and taken into considerations.

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