Bartha-Maria Knoppers

Title: Personal Genomics and Privacy

Will the era of open access databases and personal genomics via the internet spell the end of traditional concepts of privacy? Privacy in the context of health information is translated and protected under medical confidentiality if within the confines of a physician-patient or researcher-participant relationship. Both longitudinal databases and “virtual” personal genomics strain the confines of deontological and legal parameters of confidentiality. What are the convergent and divergent elements of privacy in these new contexts? And, what are the mechanisms to protect privacy, however defined?