How Probably Genetic Keeps Your Patient Data Confidential

Probably Genetic exists to help rare disease patients and their loved ones gain access to no-cost genetic testing and deliver accurate results and genetic guidance. Not only is it our mission to help individuals understand their symptoms, risks to family members, and treatment plans, but to compile enough data to make significant developments towards new treatments for diseases like frontotemporal dementia, mitochondrial diseases, PCD, immunodeficiencies, and more.

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While this patient data helps move the needle for medical research, we understand the process comes with questions and concerns around data privacy, which is why we hold ourselves to the highest standards when it comes to data security. We employ state-of-the-art security measures and hold ourselves to HIPAA standards to ensure that your data is kept confidential and fully de-identified—helping you find answers while keeping your identity protected.

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What is HIPAA?

Let’s start from the beginning. What do we mean when we say we hold ourselves to HIPAA standards? HIPAA, the Health Insurance Portability and Accountability Act, sets privacy standards to protect your medical information with these guidelines:

1. Confidentiality: Your health information, like your medical records or treatments, must be kept private. Only people who need to know about your health for treatment, payment, or healthcare operations can access it.
2. Control: You have rights over your medical information. For example, you can see your records, request corrections, and decide who else can see your information.
3. Security: Healthcare providers, insurers, and other entities that handle your health information must use safeguards to protect it from being shared without your permission. This includes both electronic and paper records.
4. Minimum Necessary Rule: When your health information is shared, only the minimum amount necessary should be disclosed. For instance, if your doctor needs to share your information with another doctor, they should only share what's relevant to your treatment.
5. Notification: If your health information is shared inappropriately, you should be notified about the breach.

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How We Share (and Don’t Share) Patient Data

Probably Genetic is able to provide free genetic testing by sharing data with drug developers that are researching and creating treatments for rare genetic diseases. However, Probably Genetic only shares aggregate and de-identified data, which means we will never share patient names, birth dates, addresses or any identifiable information. We never collect information on health insurance, social security, financial information, or citizenship status. Keep in mind that these are private drug development partners, so patient information will never be shared with or stored in public databases. 

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Patients are able to (and are encouraged to) send their test results to their treating physicians if they wish. It’s helpful for our partners to know which physicians are treating patients with specific conditions so they’re able to alert physicians to suitable clinical trials or new treatment developments. Note that while our partners will be able to identify physicians who are treating patients with a specific condition, they will never have access to the patient’s name, birth date, etc. That conversation will happen between the physician and the patient. 

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You Own Your Data

After approved patients submit their test kits in the mail, they will receive a written test result explaining the findings from our sequencing as well as an opportunity to meet with a licensed genetic counselor to help answer any questions they might have about their results. We also recommend that patients share their rest results with their treating physicians to help them develop proper care plans, but that is entirely up to the individual.

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In addition, patients will receive a file of their raw data, which they can send to a third party for additional analysis if they wish. Patients are able to request that we delete their data at any time. 

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Get in Touch

Do you have more questions about our data privacy policy, our partners, or our processes? Don’t hesitate to reach out! We have real people reading your emails and promise to get back to you quickly. Send your questions to hello@probablygenetic.com. 

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