1 Minute Read
  • A shift in the Life Sciences industry raises questions about data privacy
  • Pharma companies are collecting genetic data to refine their clinical strategies
  • Insurers are focusing on “lifestyle” data to create “mosaics” about our health and health status

Last week it was announced that GlaxoSmithKline is acquiring a stake in 23andMe.  This deal illustrates the importance Pharma companies are placing on collecting genetic data that can be used to spot new drug targets and better identify patients for clinical trials.  This initiative is part of a larger turnaround strategy by GSK to catch up with rivals.

This deal in particular is causing concern due to questions about privacy, the risk of participant’s data being comprised, and the possibility that GSK could monetize their genetic data.  The roughly 5 million 23andMe customers who submitted their samples in exchange for ancestry and health insights weren’t expecting their genetic material to be used to benefit another company’s bottom line.  This year data from an online genealogy database was used by police to catch a long-wanted murderer.  Unquestionably, this was a beneficial use of the data and it is uncertain where this will lead, although for now 23andMe and Ancestry have committed to guidelines stating they will only share individual genetic information after obtaining separate express consent. 

Meanwhile health insurers are working with data companies to collect consumer-focused information such as race, education level, TV habits, marital status, net worth, what you post on social media, whether you’re behind on your bills, what you order online, etc.  Individually, these discrete pieces of data may appear useless. But data-broker companies can easily combine them to create “mosaics” about our health and health status, and such personal information is in high demand, explained Adam Tanner, whose book “Our Bodies, Our Data” details how it is collected, sorted and sold.  These data points, along with many others, are being combined using analytics to help insurers determine how much it will cost them to insure you and possibly how much you will pay for health insurance.  

Assessing risk is nothing new for insurance companies.  It’s just now there are so many more sources of data, much of it disseminated by consumers themselves.  Most disconcerting is that the data mined could be wrong, it can be misconstrued, or misused behind the scenes to unfairly penalize and discriminate against people.  Europe banned the use of this data earlier this year, the U.S. needs to play catch-up.

Read the Latest Update: The “Great Disruptor” Disrupts Pharmacy

Recommended On-Demand Webinar – Expect the Unexpected: Preparing for Market  Disruption

Subscribe to the Cipher Competitive Strategy Blog to receive instant or weekly notifications when new content is posted.