Privacy concerns raised by use of consumer genomics data in pharmaceutical research

Eric Topol | January 26, 2015 | Medium

The largest single repository of human genetic data in the world is not at any university, research institute, or pharmaceutical company. It sits on the servers of the consumer genomics company 23andMe and consists of data from 820,000 individuals.

The company was well on its way toward its stated goal of 25 million people’s DNA when the Food and Drug Administration (FDA) ordered the company to stop selling its $99 “Personal Genome Service” kit in late 2013. The FDA claimed that its decision would benefit consumers, but instead it challenged the fundamental right of individuals to access their genetic information. The questions around personal medical data are only growing more complicated, as 23andMe’s latest move illustrates.

Already there are outcries about the potential for breach of privacy. More than 650,000 23andMe customers had consented to having their DNA used for research, including in studies conducted by pharmaceutical companies. At the time, 23andMe reassured its users that every person’s data would be made anonymous and aggregated with many others, to minimize the chance that anyone’s identity could ever become known. Yet critics are now questioning whether the customers really understood what they had consented to at the time of their saliva kit collection. The pharma industry, after all, does not have the best public image.

Read full, original article: Who Should Have Access to Your DNA?