'Use it or lose it' as an alternative approach to protect genetic privacy in personalized medicine

摘要

Scholars have spent considerable time discussing the challenges and importance of protecting privacy in the context of genomic medicine [see, e.g., 1]. There is a great deal of research and clinical potential to be gained from storing massive amounts of genotypic data, but this must be weighed against the possible risks to individual privacy, a quandary some have described as "privacy vs. the goldmine" [2]. DNA is a unique identifier and has the potential to reveal medical (and nonmedical) information about individuals and by consequence, their family members. For instance, genomic data could reveal undesired pre-symptomatic health information, nonpaternity, or even be used to frame a suspect at a crime scene [3], Access to, or disclosure of, this information, authorized or not, could lead to various forms of misuse and discrimination (e.g., employment, insurance, and financial).