ABSTRACT

This part introduction presents an overview of the key concepts discussed in the subsequent chapters. The part addresses different sites and/or modes of governance: from ethics programs, to biotechnology patents, to biomedical platforms, to genome diagnostics, to genomic information, to genome editing. It presents some of the variety in the ways social scientists have investigated modes of governance of genomics and health. The part begins its examination of governance by considering ethics programs established during the Human Genome Project. It reviews the history of the US ELSI program, examining the founding of program and controversy about its institutional design and achievements. The part discusses the ethics programs attached to major scientific initiatives in such fields as nanotechnology and synthetic biology. It addresses governance primarily as a matter of formal state regulatory policy and informal guidelines and "soft law" developed among professionals. The part provides a critical examination of the current debate about human germline genetic engineering.