Probably Genetic is the central operator and data custodian for each of our sponsored testing programs. Third parties or commercial organizations (i.e. patient advocacy groups, pharmaceutical or biotech companies, etc.) may provide financial support, but Probably Genetic will be the custodian of your data, and our priority is and always will be patient privacy and the patient experience. This means that we ensure all our internal data structures are HIPAA compliant and our entire testing pipeline is CLIA and CAP accredited. Crucially, we will never pass on identifiable information to any third parties, and if there is ever a request for this it would require your explicit consent. Furthermore, any data we pass on to any partner we work with is de-identified and aggregated, so your individual data and privacy is always protected. De-identified, aggregate data could, for example, meaningful insights on the average wait for a diagnosis or the average symptom profile for a given condition, which helps patient advocacy organizations and biotech sponsors to understand patient populations and the patient experience better for these rare and ultra-rare conditions.
Protecting the privacy of the patients that entrust us with their information is of utmost importance to us. We have outlined all of this in as transparent and patient-friendly a way as possible in the documents below. Please, if you have any concerns about your data or privacy, contact us.