Health records are highly coveted on the black market due to the wealth of personal information they contain, which can be exploited for various fraudulent activities. Estimates of their value include:
- Up to $1,000 per record: Experian reports that a complete patient record can fetch upwards of $1,000, depending on its completeness.
- Up to $250 per record: The 2019 Trustwave Global Security Report indicates that healthcare data may be valued at up to $250 per record on the black market.
- Approximately $60 per record: CNBC reported that medical records are selling for $60 each on the dark web.
Beyond illicit markets, health data holds substantial economic value for legitimate organizations:
- Healthcare Providers: Investments in data and analytics can offer economic advantages, potentially improving operational efficiencies and patient outcomes.
- National Health Systems: For instance, the UK’s National Health Service (NHS) data set has been estimated to have a potential value of up to £5 billion per annum, delivering around £4.6 billion worth of benefits to patients annually.
- Economic Growth: Data-driven health policies can drive development and economic growth, particularly in low- and middle-income countries.
The recent 23andMe data breach exposed the genetic and personal information of thousands of users, highlighting a growing concern: patients do not have full control over their health data. In an era where DNA testing, electronic health records (EHRs), and wearable devices collect massive amounts of personal health information, who really owns your data? Unfortunately, it’s often not you.
The breach serves as a wake-up call. As healthcare becomes increasingly digital, patients must take control of their health information—not just to protect their privacy but to improve their health and ensure their data is used ethically.
The Risks of Not Owning Your Health Data
If your health records, genetic data, or medical history are controlled by corporations, hospitals, or third-party platforms, you face serious risks:
- Data Breaches & Hacks – The 23andMe attack showed how easily personal health data can be stolen and potentially sold on the dark web. Often times using cryptocurrency as a covert means of transaction.
- Unauthorized Data Sharing – Companies often sell de-identified patient data to pharmaceutical firms, insurers, or researchers—without clear patient consent.
- Health Discrimination – Employers, insurers, or even banks could potentially use genetic or health data against you in ways that affect employment or insurance premiums.
- Lack of Access – Many healthcare systems restrict patient access to their own medical records, making it difficult to obtain and share vital health history.
- Loss of Control Over DNA & Genetic Data – Once you submit your genetic information to testing companies, they often retain rights to your DNA data indefinitely.
Why You Must Take Control of Your Health Information
Now more than ever, owning your health data is about more than privacy—it’s about your well-being, security, and empowerment. Here’s why:
- Protect Your Privacy – Controlling your health data prevents unauthorized access, misuse, or commercial exploitation.
- Make Informed Health Decisions – Having direct access to your full medical history helps you make better choices about treatment options.
- Improve Your Healthcare Experience – When you own your records, you can easily share them across different doctors, reducing unnecessary tests and delays
- Ensure Ethical Data Use – With ownership, you decide who can access your data, whether for medical research, AI development, or personal health monitoring.
- Secure Your Genetic Information – Genetic data is one of the most personal types of health information—you should control where and how it’s stored.
How to Take Back Ownership of Your Health Data
- Think Before You Share – Read the privacy policies of genetic testing companies, healthcare apps, and telehealth platforms before providing any data.
- Use Blockchain-Based Health Data Solutions – Blockchain technology enables secure, patient-owned medical records that prevent unauthorized access.
- Request & Store Your Medical Records – Under HIPAA, you have the right to request and keep digital copies of your health records.
- Be Mindful of Data-Sharing Agreements – Opt out of unnecessary data-sharing agreements when using health platforms or genetic testing services. If you were affected by 23andMe submit a request to delete your information.
- Advocate for Data Rights – Support policies that give patients full control over their personal health and genetic data.
