Have you heard of any of the following genealogy websites; 23andMe, Ancestry, Helix, MyHeritage, or Habit? But have you ever considered how their collecting, using and protecting the data you provide them? Concerns are mounting over DNA privacy. Keep reading to learn what is being done and what you should know.
Genealogy sites offer genetic testing to people who send in saliva samples. Using this sample they tell you all about your ancestry and let you know about genetic health risks. But up until recently there was no guidelines for handling this sensitive genetic and family data.
Guidelines have now been put in place for the following types of data:
- Data that comes from sequencing a person’s DNA
- Data that comes from analyzing the raw data
- Data that comes from people describing their own health conditions
The guidelines includes statements on:
- Accountability – what are you doing with peoples’ data
- Privacy by design – having technical controls in place to keep data private
- Inaccessible to third parties – because genetic data is linked in an identifiable person it should not be disclosed or made accessible to third parties, for example employers, insurance companies, educational institutions or government agencies
But remember, these are just guidelines. Which means they don’t have to be enforced. Just last week 23AndMe announced a deal with GlaxoSmithKline, a major drug company, selling client data for a $300 million investment. The way they get away with this is that this data is “de-identified” which means the data can’t be linked to a person
But the fact is, we have so much information at our finger times, anonymising or de-identifying data in the era of Big Data is hard to do.
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