AI in Medical Research: How Your Data is Used Without Your Consent.

According to Vox: Men who participated in the syphilis study pose for a photo in Alabama. For 40 years, starting in 1932, doctors in the segregated South did not treat Black men who were unaware of their illness to observe the devastating effects of syphilis and later dissect their bodies.

National Archives

Human Subject Research (HSR) is research aimed at obtaining information or biological samples from living individuals. They are governed by federal regulations which dictate how to interact with participants to collect data. Generally, such studies are divided into social-behavioral and biomedical.

To conduct HSR, approval from an Institutional Review Board (IRB) is required, which evaluates the ethical aspects of the studies to protect participants. It is important to note that previously the protection of such individuals' rights was not as developed as it is today. Partly this changed after the Tuskegee syphilis study scandal, which led to the formulation of ethical principles in research.

The Impact of Artificial Intelligence on Research

Artificial Intelligence (AI) has radically changed the approaches to conducting research. Previously, we studied individuals to identify general trends in the human population. Now, AI extracts vast patterns from data at the population level and draws conclusions about specific individuals. This exposes gaps in oversight systems, as most practices are based on protecting individuals rather than their data.

“If I were a doctor and knew I would be responsible for any mistakes made by AI, I would not accept it, because I would not want to bear responsibility for a possible error.”

AI has the potential to significantly improve healthcare and make research more effective, but only with a responsible approach to its use. Many current tools are not yet perfected, so their application can be dangerous.

Risks and Ethical Issues

Among the greatest risks are unreliable decisions made without proper understanding. This also raises questions about data privacy and human rights. Currently, there is insufficient legislation in the U.S. to protect data, and individuals do not have the ability to control their information.

Moreover, there are risks of data theft, as inadequate laws allow for unethical use of information. The more we rely on these technologies without adequate oversight, the more we risk facing discrimination and inequality in the future.

Therefore, it is important for IRB professionals to raise their awareness about AI, ask the right questions, and understand the risks involved at various stages of research. Artificial intelligence can bring significant benefits, but it is crucial that these tools are used responsibly.

Questions of ethics and the rights of research participants are particularly relevant in the context of rapid technological development. Data contamination, as well as insufficient protection of information, can lead to serious consequences, including the risk of discrimination. It is important that all participants in the process are clearly informed of their rights and possibilities to control their data. The development of ethics in research will be the key to ensuring trust between researchers and society.