Ms. Dockser Marcus’ suggestion that companies like uBiome be subject to citizen oversight – which would hinder innovation in both startups and established corporations, smacks of genetic exceptionalism: Would she similarly argue that Google should subject itself to outside oversight every time it updates how it datamines email and search preferences? Would GM be required to establish an ad hoc citizen review whenever it innovates in the area of autonomous driving? If Facebook’s incessant privacy policy changes had to pass public approval, they would certainly be fewer and far between.
Nevertheless, we do agree that biotech companies, and to some extent wearable technologies -- which monitor our vitals, raise unique ethical concerns that need to be addressed. For example, direct to consumer personal genomic companies raise unique privacy concerns given that genetic information obtained by the consumer overlaps significantly with that of their relatives. However, while IRBs have their place in the ivory tower of basic science research, commercial entities are not shielded from regulatory bodies such as the FDA or various market forces that otherwise tend to do a good job weeding out the dangerous or bad actors.
Dov Greenbaum & Mark Gerstein
Unpublished letter in response to:
"The Ethics of Experimenting on Yourself" by Amy Dockser Marcus
Wall St. Journal
http://online.wsj.com/articles/the-ethics-of-experimenting-on-yourself-1414170041
