Ethical, legal and social issues.

Alongside the knowledge and technical opportunities that arise from this project, it was recognised right from the outset that there would be "momentous implications for individuals and society". Recognising the "profound importance and seriousness of this venture", the project also set out to examine the ethical, legal and social implications of human genetic research, and established a special programme for this purpose.

There are many implications that can affect individuals, families and the whole community. Some of these have been identified and widely debated for a number of years now. For example:

• Possible genetic discrimination in health insurance and employment
• Informed consent issues in genetic testing
• Privacy issues and ownership of genetic information
• Bioethics of research and clinical application of genetic technology

The Human Genome Project's Ethical, Legal and Social Implications Programme has published a number of reports and recommendations, funded research, and held seminars on these issues. Some of the outcomes of this programme have led to law and policy changes in various countries, but there are many issues that are not yet resolved.

One global response to these issues is the Universal Declaration on the Human Genome and Human Rights. The process to develop this began in UNESCO early in the life of the human genome project, and the final declaration was adopted by UNESCO in 1997, with the United Nations General Assembly endorsing the Declaration in 1998.

The ethical, legal and social implications need to be finally worked out within the context of each society, so that the laws and ethical practices that are agreed upon, take into account the values, culture and social and economic framework of each society. More public education and debates are needed to develop these further.

Whether the ethical, social and legal issues and debates will move forward at the same pace, and be resolved in time to deal with the technical possibilities that arise, is a more difficult matter to predict. If they move relatively closely, or in parallel, there is likely to be less controversy about the whole set of issues. But if there is a disjunction between them, there will be greater issues to resolve.