Is It Safe to Give Medical Data Away for Citizen Science?

the danger of citizen science projects

They say data is the new gold.

If collected in large volumes and used the right way, data speeds up research and powers new technologies. The potential big data holds for business and science makes it one of the most sought-after commodities today.

What makes data radically different from natural commodities, like oil and gold, is that it  is only valuable in vast numbers. Consequently, data collection is on the rise and so are discussions around data protection and data privacy rights.

As a human being, you “store” loads of valuable data without realizing it. Your personal health records can help find patterns in pathogenic mechanisms or speed up the development of treatments for incurable diseases.

And it’s not just about health. If you live in a particular region, you can help collect data about rare plant species and, if all instructions are followed, these data will be comparable to those collected by professional scientists.

This contribution by the public to research is called citizen science and, despite being a positive thing overall, it holds some risks for personal data privacy and safety.

What Is Citizen Science?

The term citizen science stands for a collaboration between scientists and the general public where the latter can contribute to research by helping collect or donate necessary data.

On that basis, anyone who collaborates with professional scientists to contribute time, effort, resources, and—most importantly—data toward scientific research can be considered a citizen scientist.

Public participation in science is driven by different things, from financial and personal reward to a desire to do something meaningful. Regardless of the primary motivation, most citizen scientists feel good about their active contribution to advancing scientific knowledge.

However, citizen science is not just rainbows and sunshine? Believe it or not, there are serious drawbacks for all parties involved.

The Dark Side of Citizen Science Projects

One of the biggest problems of citizen science for those on the scientific side is that results of citizen science projects are sometimes labeled “unprofessional.” This makes sense since it is relatively hard to confirm adherence to certain quality standards.

Those putting the “citizen” in citizen science face a number of risks, too. For instance, some of the projects end halfway through so the final results never see the light of day. In that case, there’s a risk of wasting time and effort.

However, lost time is not the biggest risk out there. Misuse of your sensitive data is. And it becomes an especially big concern with medical research projects. Like any other research type, medical research is impossible without data. To inspire innovation and find effective treatments, medical scientists need large volumes of data to analyze to uncover patterns.

Motivated to help scientists, people share their sensitive health information believing they’re donating data to a good cause. In most cases, this is true. But there are exceptions—at least two big risks citizen scientists in healthcare should be aware of.

The Risk of De-anonymization of Data

For most of us, our personal medical data is sensitive. After all, who would want their health history or genome details to be out in the world so anyone can see and discuss them? That’s why the data people donate for research is usually anonymized. The problem with anonymizing data is that with enough effort and skills, it’s possible to de-anonymize it.

As multiple cases have confirmed, it is relatively easy to re-identify people whose data is published by cross-referencing against other large databases. There are cases of credit card data, cell phone records, and even genomic datasets being de-anonymized by combining against other relevant datasets.

Although your name is removed, other pieces of information such as your age, gender, and ZIP code may remain, and this appears to be enough to re-identify people if needed.

When put in wrong hands (those of a political opponent, romantic rival, or business competitor), reidentified health data can serve as a tool for manipulation or humiliation. In fact, stolen, identified medical data is worth more on the online black market than credit card credentials.

If you give away your sensitive health data, you should be ready to lose anonymity. If you’re not prepared for that, you’d be better off not giving your data away.

The Risk of Information Misuse

Despite the terms of use and privacy rights documents, another risk you face when donating your health data to citizen science is that you cannot be entirely sure who’ll have access to it and for what purposes it will be used.

For example, there’s always a chance that your health data could be sold to insurance and pharmaceutical companies. If that happens, what you wanted to be a good deed may turn out to be the opposite. Instead of contributing to progress in healthcare, you’ll help multi-billion dollar industries make even more money by using what they know about our health.

Furthermore, if the data is poorly anonymized or de-anonymized, an insurance company would know your detailed medical history, making it a lot easier to find an excuse to not pay or reimburse your bills. From another angle, if pharmaceutical companies know too much about your health, they will know precisely what appeals to make in advertising and sales in order to more effectively manipulate you to purchase their product.

To minimize the risk of sensitive information misuse, make sure you donate your data to trusted organizations and projects only.

The potential benefit of contributing your bodily information to medicine is significant enough to counterbalance the risks. If you decide to give your health data away, you’d better choose projects that have been around for some time, have good reviews and reputations, or are those run and supported by organizations you trust.

Given how serious personal data protection is, it’s likely that overprotection will result in a difficult research climate. With this in mind, your decision to give away data for research will have an even greater impact. So if you feel like supporting science, do it. Just remember to stay reasonably critical and cautious.

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