What role does justice play in biomedical research?
By Amelia Hood
We can think of many examples of injustice in the history of biomedical research—the Tuskegee syphilis study, for example—where people were mistreated and harmed in the name of science. In Tuskegee, scientists were studying people who had syphilis when, early in the study, penicillin was discovered as a cure for the disease. Instead of stopping the study, scientists denied the participants the penicillin so they could continue studying the disease for another 25 years. This became a public outrage and resulted in new rules governing biomedical research.
But now, biomedical research can be done on extracted biosamples, like pieces of tissue removed during surgery, instead of directly on patients. When research is done on our biosamples, ones that were taken at the doctor’s office during a medical procedure, instead of on ourselves, where does justice come in?
In the documents governing biomedical research in the United States, justice is defined as a fair distribution of the benefits and harms (or risks of harms) that might come from participating in research.
One governing document, the Belmont Report, says, “an injustice occurs when some benefit to which a person is entitled is denied without good reason or when some burden is imposed unduly.”
When your biosamples are distributed to researchers, one risk you still face is that your identity, or some sensitive health information about you, might be exposed to the wrong people. In order to protect against that risk, the hospital will remove your name and other identifiable information from your data.
Unfortunately, this also means that you are cut off from any benefits that might come from research using your samples. Researchers might learn something important that could inform your treatment. The research could even result in the development of an effective new drug or treatment that might not help you personally, but will go on to help other patients like you. Under current policies, you have no way of knowing any of this. You can’t even tell if your samples were actually used, or if they’re still in the freezer.
To us, this is an injustice—patients are denied information that we believe they are entitled to: information about their own bodies.
It doesn’t have to be this way. Cutting edge technology like encryption can protect your identity and sensitive information from being exposed to unauthorized parties, while still allowing you to maintain a connection to your samples. Our decentralized biobanking app (“de-bi”) utilizes blockchain technology that protects your privacy according to current standards, but also allows you to learn about your sample donations in ways that most patients cannot.
With this connection to your samples intact, you can also rightly share in the benefits of research. In our vision of the future, every patient can enjoy these rights, and the benefits of research—be they medical breakthroughs or just the satisfaction of contributing to something greater than yourself—can be distributed equitably among all people.
Jan 27, 2023