PSU Magazine Fall 2000

J ust as this past summer was heating up, news media throughout the world were touting a major scientific breakthrough: the mapping of the human genome. •» Never mind that the mapping wasn't-and still isn't- complete. And never mind that scientists are far from agree- ing on the number of genes humans have, and exactly how they work within our ce lls. The fact that science appeared to be close to deciphering the blueprint for what makes us human was at once wondrous and creepy. Wondrous because of the possibilities for fighting geneti– cally triggered disease. Creepy because, some feel, scientists are peeking through the blinds of our private domain, enabling them to uncover secrets that many of us would pre– fer to keep to ourselves. The human genome project also has added fuel to a debate that has been stirring in Oregon for the past six years. The debate centers on how our genetic information may be used by pharmaceutical researchers, by insurance companies, and by anybody else for whatever reason. Three Portland State faculty are at the forefront of that debate, and the work two of them are doing now will impact how the Oregon Legislature will tackle genetic privacy issues when it reconvenes in January. Margaret Everett, assistant professor of anthropology, is a member of the Genetic Research Advisory Committee (GRAC). The group was created by the Legislature to study genetic privacy issues and develop a legal framework to define the rights of individuals whose DNA samples are collected, stored, analyzed, and disclosed. Her work as a cultural anthropologist makes Everett uniquely qualified to speak about the ethics of studying human beings. A specialist in urban development in Latin America, Everett says people have the right to say yes or no to being the subject of research, even if that research poses no risk. That same sentiment formed the backbone of the 1995 Oregon Genetic Privacy Act, the first law of its kind in the nation, which says a person's DNA is his or her own personal property. lt cannot be used for any purpose, including research, without that person's informed consent. Since then, lawmak– ers have amended the Act to create exceptions, in effect soft– ening the intent of the original law. One bill, passed by both houses of the Legislature and signed into law by Gov. John Kitzhaber, permits research if the samples are anonymous, and if it is conducted under federa l policy guidelines. That bill also created GRAC, the advisory committee Everett sits on. GRAC is currently working on a bill that will further update the Act in an effort to balance the needs of research and the privacy of the public. Everett says it may include fines against medical lab if genetic test information is leaked. E verett's feelings on the subject are as personal as they are academic-maybe more so. Her three-month-old son Jack died in 1998 of an extremely rare disease linked to a recessive gene that both she and her husband share. At that point, she says she and her husband felt "thrust into the world of genetics." t While Jack was still alive, doctors took tissue samples ro see how the disease might manifest itself. After he died, more