One of the essential questions in establishing a body of law around the area of genetic information privacy is whether information can be truly anonymous. Researchers were recently successful in identifying the surnames of male individuals who had contributed purportedly anonymous genetic information for research purposes. Thus, in developing a regime of genetic privacy rights, one’s right to be anonymous should not form a central part of that law unless and until additional research makes clear that anonymization is possible. In the event it is not possible, a better model for establishing privacy rights are those in place with respect to decidedly identifiable information, such as health care and credit reporting.
Anonymous, No More? Data Privacy in The Genetic Age, by Talia E. Sukol