Why do the materials in the information package stress confidentiality, anonymity, and how my sample and genetic information will be handled and used?
Confidentiality and anonymity are important in connection with the privacy of your genetic information. The uses of private genetic information have been an issue in recent discussions of DNA testing. For example, the Genetic Information Nondiscrimation Act of 2008 (GINA) was passed in response to concerns that health insurers would charge people higher premiums, or employers would refuse to hire them, if they knew that genetic testing had shown they had a predisposition to developing a disease. Ownership and use of genetic samples and data have also been debated in recent discussions about the ethics of biomedical research. For example, the Havasupai Indian tribe recently settled a lawsuit with a university that had done scientific research on tribal members’ DNA that was different from the research on diabetes for which the DNA had been donated and not acceptable to the donors when they found out. It is possible that our society is in the middle of important changes in how we underst
