Congress first recognized this day in 2009 to raise awareness about the importance of protecting one’s personal data on the internet.
Christi Guerrini J.D., M.P.H., assistant professor with the Center for Medical Ethics and Health Policy at Baylor College of Medicine has written an article calling attention to privacy implications of sharing DNA information. Quoting from the article at http://bit.ly/2RR1rVo:
“… thanks especially to last year’s Facebook-Cambridge Analytica scandal, it’s probably fair to say that awareness that one’s online information might be misappropriated is at an all-time high. But are we any better at protecting ourselves?
“In the area of genetics, there is some reason to think not. We live in a time of intense interest in personal genetics that has fueled the proliferation of large databases populated with individual genetic information. Some of these databases are assembled and managed by researchers.
“For example, the 100,000 Genomes Project in the United Kingdom and the All of Us initiative in the United States are two national research programs building databases from the genetic information of participants. The development of these databases is critical to the advancement of precision medicine, which requires large volumes of data to reach statistically significant conclusions.”
The article then goes on to discuss privacy implication of direct-to-consumer (DTC) genetic testing companies as well as by medical researchers who build large databases that are critical to the advancement of precision medicine, using the information about individuals’ disease risk, improvement of their diet and fitness, and even selecting nutritional supplements tailored to their DNA profiles. These last topics can result in saving or prolonging lives.
How do we help advance science, improve our own health, and simultaneously preserve individual privacy? Dr. Guerrini does not provide many answers but does point out the issues that should be considered in her article in the Baylor College of Medicine web site at: http://bit.ly/2RR1rVo.