Rules for Research on Human Genetic Variation: Lessons from Iceland

• Main Author: Annas, George J.
• Format: Text
• Language: English
• Published: Scholarly Commons at Boston University School of Law 2000
• Subjects: DNA; consent; genetics; medical records; Health Law and Policy; Law; Iceland
• Online Access: https://scholarship.law.bu.edu/faculty_scholarship/1306; https://scholarship.law.bu.edu/cgi/viewcontent.cgi?article=2300&context=faculty_scholarship

Research on genetic variation aims to understand how genes function and requires the comparison of DNA samples from groups of individuals to identify variations that might have importance for health or disease. This work is easier if the samples are linked to accurate medical records and genealogic information. Iceland has medical records for all its citizens going back to World War I and detailed genealogic information going back even further. Because Iceland's small population (270,000) has long been isolated and homogeneous, it is thought by many to be an ideal place to search for disease-related genes. Journalists have cavalierly labeled Iceland's “the most homogeneous population on earth” and have described the country as an “island so inbred that it is a happy genetic hunting ground.”