U.S. Department of Energy Human Genome Program  Projects in Ethical, Legal, and Social Issues   published October 1999

Foreword 1999 Projects Related Web Sites Completed Projects Completed Workshops Retrospective

Foreword

Since the formal beginning of the Human Genome Project (HGP) in 1990, the U.S. Department of Energy (DOE) and National Institutes of Health (NIH) have committed 3% to 5% of their annual HGP budgets to establishing the world's largest bioethics programs. A model for others, this program is devoted to the study of numerous and complex ethical, legal, and social issues (ELSI) surrounding the increased generation of genetic information through the HGP.

When the HGP began, scientists and administrators anticipated that it would be completed by 2005; because of advances in technology, we now expect a nearly complete "working draft" of the genome by the spring of 2000. This draft not only will accelerate genome science but also heighten the project's societal impacts.

The U.S. ELSI program initially emphasized the privacy of genetic information, its safe and effective introduction in clinical settings, fairness in its use, and professional and public education. In the latest 5-year plan [Science 282, 682-89 (1998)], ELSI goals have evolved to include studies of issues attendant on finishing the sequence and human sequence variation; integrating genetic technologies into healthcare and public health activities; incorporating genomics and gene-environment interactions into nonclinical settings; studying philosophical, theological, and ethical perspectives; and assessing the impact of genomics on socioeconomic factors and concepts of race and ethnicity.

DOE ELSI Goals
As its portion of the total program, the DOE ELSI component is targeted at the following:

• Study the privacy and confidentiality of personal genetic information in contexts such as the workplace,
• Commercialize genetic information, genome research results, and intellectual property protection,
• Support conferences and research activities,
• Promote knowledge about the HGP and its ELSI implications, and
• Study ELSI issues surrounding such complex multigenic conditions and disease susceptibilities as diabetes and the cancers that constitute the majority of genetics we worry about. Such conditions raise concerns in a particularly difficult form because the underlying science often is poorly understood.

The HGP's potential benefits are enormous for medicine, bioremediation, agriculture, and many other socially and economically important areas. As the project moves closer to obtaining the complete human DNA sequence, all of us will face issues surrounding individual sequence differences and the societal implications of knowing those subtle distinctions before we know their biological effects. Although many ELSI issues are not novel, they nonetheless are difficult and need urgently to be addressed. These difficult challenges will require our best efforts, along with the public's involvement. Only by dealing directly and openly with such issues can we realize the benefits of genome research and minimize the difficulties.

We invite you to visit our Web sites

• http://www.science.doe.gov/
• http://www.ornl.gov/hgmis

Daniel W. Drell, Ph.D.
DOE ELSI Program Manager

Last modified: Wednesday, December 07, 2005

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