Over the years, the collection of medical data has proven to be invaluable in furthering research, developing new drugs and tweaking treatment methods. However, it’s not only scientists and researchers who are keen to get their hands on this type of information. Indeed, an entire industry has emerged in recent decades surrounding the collection, storage, analysis, and sale of medical data.
This practice has only become more widespread and insidious with the arrival of the digital revolution. For example, a leading medical data brokerage company in the US automatically receives petabytes (1015 bytes or greater) of information collected by pharmacies, insurance companies and medical practices across the country. This data can then theoretically be cross-referenced against other records to identify the individual (thus circumnavigating the strict anonymity laws on medical data) and sold to the highest bidder.
What are the risks of medical data brokerage?
Generally speaking, the most interested parties in acquiring this type of data are pharmaceutical companies keen to fine-tune their research methods, as well as drug retailers eager to target their products towards more suitable candidates. However, the ethical questions involved in the trafficking of medical data are highly concerning and illustrate just how easy it is for faceless corporations to obtain all kinds of highly personal information about us.
Meanwhile, there’s also the risk that these medical records could fall into the hands of hackers, cyber criminals, and stalkers. What they can then do with it encompasses a laundry list of crimes and misdemeanors, from identity theft and fraud to blackmail, doxxing, and stalking. As such, keeping it out of the clutches of data brokers in the first place is the best course of action to prevent such outcomes.
Removing medical data that’s already out there
Of course, the average person has little to no control over what their doctor, pharmacist or other healthcare professional does with their medical history. This means that there is almost certainly reams of data about them already present on the internet. In order to remove it, it’s necessary to file a removal request to each broker individually. A list of such entities, along with information on how to request data removal, can be found in these opt-out guides.
This process is undoubtedly a time-consuming and tedious one, which is why it may be preferable to employ a third party like Incogni to do the heavy lifting instead. As well as automatically sending removal requests to dozens of companies at a time, Incogni also provide regular progress reports on the status of the medical data in question and its exposure online.
Limiting future access
Due to the vast array of sources via which medical data can be acquired by brokers and sold onto other businesses, removing it from the cybersphere will be an ongoing process. However, there are some steps each individual can take to ensure that as little of it makes it there in the first place.
These include tweaking the privacy settings on every medical app, website or smart device that is used regularly, as well as considering the deletion of accounts on those which do not offer an adequate level of control. Refraining from making healthcare purchases online (as this creates a digital trail which can be followed to surmise information about an individual’s condition) is also advisable. Finally, reading the small print when applying for any insurance policies or other medical services and practicing vigilance when it comes to user agreements and privacy policies is also of paramount importance.
Medical data should theoretically enjoy more comprehensive legal protection, but unfortunately it remains underregulated in many states today. By following the above steps, it’s possible to exert greater control over how it is stored and used in the future.