Rhode Island Department of Health Genetics Website

Ethical Issues

Ethics and genetics are a very hot topic. Genetic information can have far-reaching consequences on lifestyle, relationships, employment and insurance. The Human Genome Project (HGP) raises a lot of questions, including:

• How should this new genetic information be used?
• Who should have access to it?
• How can people be protected from misuse of the information?
• How can we properly educate people so that they are aware of the implications of genetic testing?
• Are there enough properly trained individuals to provide genetic counseling before and after testing?
• Do people really want to know their medical futures pre-symptomatically?

To address these issues, the Ethical, Legal and Social Implications (ELSI) Program was established as an integral part of the Human Genome Project. The HGP is devoting 3-5% of its annual budget to look at issues of confidentiality and privacy. The ELSI Program was designed to look at the implications of the research while it is still being carried out. Hopefully, policies can be developed to avoid abuse of genetic information and would assure that the information is used for the benefit of individuals and society.