Recent advances in technology allow the online activities of Internet users to be monitored, gathered, and recorded without their knowledge. New electronic tools can compile extensive data on exactly what an individual is doing on the Web. This information can then be almost simultaneously cross-referenced with additional data to create detailed dossiers, including the user’s age, zip code, gender, and even health-related issues. While there is a vast amount of consumer information that can easily be accessed, at present there are very few restrictions on how the data amassed can be used. As a result, when consumers go online to search for medical knowledge or to find needed support, they risk providing marketers, data brokers, and, consequently, even employers with a host of sensitive information. Such a possibility is more than theoretical because comprehensive background screening reports currently exist that profile one’s social media activities or participation in purportedly anonymous Internet discussion groups. Furthermore, even when Internet users take steps to conceal their online activities, job applicants are increasingly required to provide log-in information. Apprehension over the potential for misuse of personal health information and genetic data by employers is not entirely new. In 2008, Congress enacted the Genetic Information Nondiscrimination Act (GINA), a law designed to provide protection from not only the utilization of genetic data and family health history in connection with employment-related decisions but also the initial acquisition of such data. However, when the Act and its regulations are examined closely in light of advancements in the manner in which data is now gathered and the increasing ease with which seemingly anonymized data can be linked to a particular individual, only then do serious deficiencies become apparent. These defects must be corrected to alleviate patients’ fears over obtaining genetic testing today due to their concerns regarding the use of their genetic information tomorrow.
Case Western Reserve Law Review
Suggested Bluebook Citation
Christine S. Davik,
We Know Who You Are and What You Are Made Of: The Illusion of Internet Anonymity and Its Impact on Protection from Genetic Discrimination,
Case W. Res. L. Rev.
Available at: https://digitalcommons.mainelaw.maine.edu/faculty-publications/3