2. Ethical, Legal & Social Implications (ELSI) Research Program of the Human Genome Project Tricia C. Clarke Biotechnology Project BIO 210 (Prof. S. Saunders) April 30, 2003

3. ELSI Awareness

4. ELSI History Why? How much? Purpose

5. Key ELSI Issues Addressed Confidentiality and equality in utilizing genetic information Monitoring of genetic testing Concerns of genetics research Public and professional education

6. ELSI Policy and Legislation Privacy of genetic information Insurance and employment discrimination Informed consent (protection in human research) Genetic testing and counseling (hearings & testimony)

7. ELSI Program Outreach to Minority Communities One-stop web page Minority organizations Literature

8. ELSI Applications Be informed Ask questions Search for answers

9. THANK YOU! “ Knowledge is of two kinds: we know a subject ourselves, or we know where we can find information upon it.” ---BOSWELL Life of Dr. Johnson, Vol. 1 (1791).