Ethical and practical aspects of human studies

Increasingly, genetic information holds the promise of prevention, earlier detection, and better treatment for cancer and other genetically related diseases. Laboratory markers are giving insight into the role of measurable genetic changes; however, there is often difficulty in translating laboratory data into practical use in human populations. Human populations can be difficult to study, and, correctly, there are strict regulations regarding the use of humans as study subjects for many kinds of research activities. Various study designs have a differential ability to prove cause and effect relationships, and will similarly have a differential ability in validating the usefulness of genetic markers, Just as conducting bench research has a traditional set of problems, working with human populations has its own set of potential difficulties. In reality, workers and others are often exposed to carcinogenic substances, usually without their knowledge, and without their informed consent. As genetic information becomes more readily available, and in finer detail, there is a great risk of misuse by employers, insurance companies and others. Placing blame on someone's genetic make-up may once again put into vogue a "blame-the-victim" mentality instead of continuing efforts to clean up workplaces and the environment, or restricting the use of hazardous products. No genetic information should ever be used to deny employment or modify insurance rates. Individuals should be able to maintain personal control over their genetic information. Positive aspects of the use of genetic information can be used to decrease disease and make environments safer. (C) 2001 Elsevier Science B.V. All rights reserved.