LINKS: Privacy and Genetic Data
International Declaration on Human Genetic Data: UNESCO
Handling Genetic Data in the Laboratory: Privacy Issues in Biomedical and Clinical Research 1998. Commision on Life Sciences
Genetic Data- Looking backwards, looking forwards: 1998
IBM to put Genetic Data of workers off limits: NY Times October 2005.
Your Genetic Data is a Snitch: Salon February 2009
Amgen to acquire DeCode: NY Times December 2012
There is now a proliferation of consumer self-testing kits.
23andMe SNPs for everybody, is undergoing FDA regulatory review to provide health information December 2013, after a warning letter from FDA. This has spawned other services (Promethease, and other tools) for analysis. Early 2015, the FDA has now approved the first consumer genetic test without going through a medical professional.
Finally, Henrietta's case (of HeLa cells) comes to some sort of closure, over genetic privacy.