Ethical, Legal and Social Aspects of Precision Medicine

Abstract

In this chapter, the ethical, legal, and social aspects (ELSA) under the view of personalized medicine (PM) research and implementation in the healthcare context are illustrated. Nowadays, there is a multidisciplinary open debate on the current state of research on the ethical, legal, and social implications of PM. This chapter will be of interest to researchers and healthcare professionals to start their knowledge on PM, focusing on ELSA basic concepts related to the opportunity of sharing genomic and health-related data, ensuring continued progress in our knowledge of human health and well-being. In a general framework, the citizens’ data sharing and risk to privacy, informed consent, unsolicited or “incidental” findings, General Data Protection Regulation (GDPR), and some other general aspects related to data regulation are illustrated for providing basic knowledge and starting point to understand ELSA and gradually becoming more adept in performing these aspects under PM research and implementation. It is also briefly described the aspect of intellectual property and health technology assessment. Last but not least, one short section is dedicated to work and genetic discrimination. Also, briefly, the concept of equity and PM is described. This chapter closes with a discussion about the sometimes confusing concept of ELSA research versus ELSA on PM research.