In the University Medical Center Amsterdam (VUmc), patients are not always being told that the medical tests they undergo can serve academic research purposes in addition to the original diagnostic purpose. Patients feel misled, and experts are concerned about the lack of medical transparency, according to research by Nieuwsuur. One of these experts is Martin Buijsen, Professor of Health Law at Erasmus School of Law. At Nieuwsuur, he stresses the importance of medical transparency.
In the VUmc, specifically in the Alzheimer centre Amsterdam, it is standard practice that patients undergo a combined diagnostical investigation, which consists of several tests in one day. This so-called one-stop-shop method is not just used for diagnosing the patient with Alzheimer’s but also for academic research on the disease. However, for patients and families, it is not always clear which tests are necessary for the diagnosis and which tests are solely used for academic purposes.
The difference is not clearly explained, and in addition, participation in academic research is not always presented as optional. Transparency, however, is of the essence, according to Buijsen: “It must always be clear for the patient what is part of the diagnostical research and which tests are used for academic research.”
It is not uncommon for patients to participate in academic research, but participation does not happen without consent. “The explanation of a researcher to someone who wants to participate is important; that explanation must occur”, according to Buijsen. “If it is not made clear whether a medical test is necessary, an information error is made by the doctor, which is against the rules.”