Consumer Genetic Privacy Manual

When Watson and Crick unraveled the structure of DNA they paved the way for tremendous advances in science and medicine. That discovery has facilitated the development of diagnostic tests which can predict the likelihood of suffering from certain diseases. It has enabled scientists to investigate new ways of producing drugs and treatments. However, all scientific advances carry potentially detrimental consequences and this is as true of genetic technologies as it is of nuclear power or the internal combustion engine. Currently, among the areas of progress in genetics has been the development of tests that claim predictive knowledge of disease onset.

Scientists have already identified genetic markers for various diseases and health conditions, including cancer, diabetes, Alzheimer’s disease, Huntington’s disease, cystic fibrosis, and potentially thousands of others.  Genetic tests are currently available to identify predispositions to specific conditions, and more are expected as science advances. Although none of these tests predict with full certainty that a condition will develop, they provide a new opportunity for individuals to know more about the potential risk of disease for themselves and their families.  Once informed about their genetic status, individuals can take proactive steps to protect their health, enhance their well-being, and lower health care costs for themselves and society as a whole.

Developments in human genetic technology, including those in the area of predictive genetic testing are promoted as holding great potential for improving health and economic growth. However, these developments also warrant concern about the privacy of genetic information and the potential uses to which such information may be put. Two emerging closely-related issues have created particular disquiet: genetic privacy and genetic discrimination; that is, the protection of individual genetic information and the differential treatment of individuals on the basis of actual or presumed genetic differences. While this may potentially take the form of positive or negative treatment, concern have focused on the use of genetic information by third parties which is prejudicial to a person's interests, such as the exclusion from insurance or employment.

There has been much debate as to whether genetic information warrants special protection. Without disputing that other health information may be equally sensitive, particular attention is justified in this area because of the predictive capacity of genetic information and the tendency to treat what is usually only probalistic information about genetic risk as determinative of a person's future health status. Because of the novelty of these developments, knowledge about the implications of genetic test information is presently incomplete, even in the science and medical community, let alone amongst third parties in the commercial sector that may have an interest in accessing the genetic information of individuals. In these circumstances, there is a real risk that this information may be misinterpreted or misunderstood. As consumers in an increasingly geneticized marketplace, it is vital to understand who is entitled to obtain our genetic information and the uses to which it can be put.