We are all familiar with the idiomatic expression, “Why buy the cow when you can get the milk for free?” In a piece earlier this week from “The Washington Post,” genetic-testing company, 23andMe, Inc., announced it will share data from 650,000 customers in a partnership deal with Pfizer, a global pharmaceutical company.
In a healthcare system dominated by the acronym HIPAA (Health Insurance Portability and Accountability Act), a logical first question may be: “Is that legal?” The simple answer is yes.
In a book published by the National Center for Biotechnology Information (NCIB), the intent of HIPAA was to make health care delivery more efficient and to increase the number of Americans with health insurance coverage. Yet, study after study, details how HIPAA has actually had a negative impact on medical research. HIPAA has created a selection bias, reduced patient participation, delayed medical advancements and caused large administrative burdens for covered entities/organizations that are required to enforce HIPAA.
Consumers, anxious to find out if they are related to Genghis Kahn, have signed consent (knowingly or not) and that data will now be shared. Yet in medical clinics around the country, some mom who is trying to get her baby immunized is signing multiple HIPAA forms because the law states that this data must be treated differently.
A few questions emerge:
- Should the data you share in your doctor’s office require more privacy than the DNA sample you sent the genetic-testing company?
- At what cost are we maintaining privacy, when customers have paid 23andMe, Inc. $99 to sell their data to the highest bidder?
- And, while not “free,” has Pfizer found a brilliant way around the “regulatory snake pit” that is HIPAA?
Let us know your thoughts in the comments!