In recent years, tens of thousands of Pennsylvanians have purchased services and provided saliva samples to genetic data companies, such as Ancestry and 23andMe, to gain insight into their family history or health. However, there have been several instances where certain genetic testing companies have profited off consumer’s genetic data without their consent, most commonly by marketing and selling genetic data to third parties. In response to this issue and other privacy concerns, twelve states have passed legislation to codify privacy protections for consumer genetic data, and I believe we must also take similar steps to address these concerns and provide greater privacy protections for our consumers using these services.
 
For these reasons, I will soon be introducing legislation that will create greater transparency between genetic testing companies and consumers, require express consent prior to using consumer data, and ultimately allow customers to have direct control of their genetic data through deletion requests and other privacy measures.
 
We must recognize the need to safeguard this sensitive information and enable consumers to take control of how their genetic data can be used. Please join me in supporting these efforts to address these harmful business practices and improve privacy protections for Pennsylvania consumers.