Genome Ethics, Law & Policy

With the availability of the full sequence of the human genome and those of now hundreds of other organisms, there are enormous opportunities and expectations for utilizing these sequences – and the knowledge and understanding that comes from them – to benefit the public welfare. At the same time, the rapidly increasing pace of discovery in genome sciences and the prospect of widespread use of genomic information has raised awareness of a number of potentially troubling issues for society at large, in areas as diverse as individual rights, genetic discrimination, privacy, race and gender issues, the nature of humanity, personal responsibility, intellectual property law, and national health and science policy.

This has never been clearer than it is today, as rapidly advancing and ever-cheaper technologies have made whole-genome sequencing all but routine and truly personal genomics is here. With those advances, the questions the science raises for society have only grown deeper and more urgent. IGSP investigators are exploring these intersections between genomes and society and what they mean or might mean in the context of our personal and social lives, our health and health care, our legal and regulatory systems and our very identities.

The IGSP also houses the Center for Public Genomics (CpG), a Center of Excellence in Ethical, Legal, and Social Implications (ELSI) Research co-funded by the Department of Energy and the NIH. CpG was established to explore the value of "open science" norms and practices as well as to study the benefits and risks of intellectual property protections in genomics through historical, legal, economic and empirical research.