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

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.

Biobanking and public health: is a human rights approach the tie that binds?

“…As with early debates in medical ethics and bioethics generally, much of the ethical and legal attention in biobanking has been individualistic, focusing on informed consent (Beskow and Dean 2008;Brekke and Sirnes 2006), privacy protections (Chen et al 2011;Evans 2009), and risks of exploitation, especially in vulnerable populations (Lo 2004;Bernhardt et al 2003;Dodson and Williamson 1999). Important as these topics are, some now believe the time has come to update the ethical/legal dialog about biobanks to accommodate broader social and political perspectives (Meslin and Cho 2010;Kaye 2004;Caulfield et al 2007).…”