Focus on global patient engagement and as yet undiscovered therapeutic targets
Two researchers, one from Charité – Universitätsmedizin Berlin and one from the Berlin Institute of Health at Charité (BIH), have been selected for grants by the European Research Council for their ideas. Dr. Birgit Nemec holds the position of Professor of the History of Medicine. She plans to devote herself to the engagement of patients with drug-related disabilities as well as the shift in how iatrogenic risk is handled since the disastrous impact of the medication thalidomide in the 1950s to 1960s. Biomathematician Dr. Maik Pietzner is studying potential new targets for therapies in the case of common diseases that are often neglected. Each of the early-career scientists is to receive about 1.5 million euros over the next five years to execute their innovative projects and develop a working group.
ERC Starting Grants are among the most prestigious awards available at the European level, enabling cutting-edge research across a broad range of disciplines. This gives researchers in the early stages of their careers a way to launch their own projects, form teams, and pursue their ideas. The European Research Council (ERC) announced today that 400 Starting Grants had been awarded to young researchers all over Europe. Charité is represented again, with one researcher from Charité and one from the BIH having been selected.
Drug-related disability: learning from patients
The names echo down the years: Primodos, Duogynon, Depakine, Contergan. Two of these drugs were used to test for pregnancy, one is an anti-seizure medication, and one was supposed to alleviate insomnia and difficulties during pregnancy. All of them had one thing in common: Children whose mothers took these kinds of medications during pregnancy were born with disabilities, in some cases severe disabilities. Some of the active ingredients are still in use today, but in narrowly defined applications. Those affected and their family members fought for a long time – and, in some cases, are still fighting – for recognition that their disabilities were due to medication and for compensation. One of the biggest medical disasters ever to occur in this context was the use of thalidomide, a drug that was first marketed in 1957 as a sleep aid and tranquilizer sold under the trade name Contergan.
It is often difficult to prove a direct connection between maternal use of medications during pregnancy and birth defects or other harms. All over the world, and especially in the second half of the 20th century, groups of patients have formed to share their stories and connect with others like them as a result. Acting in concert or as individual groupings, they fight for investigations, research on the causes, and recognition for their disabilities. Beyond Thalidomide: The Patient as an Agent of Change – is the title of Nemec’s new project. Nemec, who specializes in the history of medicine, plans to trace the international rise of engagement among patients with drug-related disabilities.
“We want to understand how these new players have changed ideas of health and sickness in civil society and the research sector,” she explains. “They have created an urgency that we still face today. It is astonishing that to this day, there is still no historical study of how those affected behave.” What actions do these patients take, and how do they organize? How do they tap into and acquire resources? What is their contribution to change and to shifting mindsets? Nemec plans to use extensive historical research and library and archival work in conjunction with interviews of contemporary witnesses in many countries around the globe, from Latin America to Africa and Southeast Asia, to trace the history of drug-related disability in the context of reproductive health from the patients’ perspective for the first time. This history will complement the expert-centric view that has dominated in the past while creating an extensive framework relating to how patients engage.
Nemec has been studying the role of patients and activists in negotiating knowledge and practices in the contemporary history of pregnancy and reproduction in depth for a long time now. One of her current research projects at the Institute of the History of Medicine and Ethics in Medicine at Charité is working with patient groups to trace the international history of hormonal pregnancy tests. Another project studies the shift in approaches toward risk and prevention in the course of pregnancy and reproduction in Germany. Her research also focuses on the material and visual cultures of the sciences, the history of urban spaces, and the politics of memory. She is a member of Die Junge Akademie, an academy of sciences, humanities and arts that is aimed at early-career researchers and jointly supported by the Berlin-Brandenburg Academy of Sciences and Humanities (BBAW) and the German National Academy of Sciences Leopoldina.
Genes as the key to new therapies
Most diseases have a polygenic background: Many different genes are involved, interacting in ways that are as yet poorly understood. Even the slightest changes in the relevant genes can increase the risk of disease. This is the starting point for Dr. Maik Pietzner, head of the Computational Medicine research group at the BIH, and his new project, GenDrug. There is a lack of safe and effective medications for many diseases that are common, but have still been neglected. He views genes as key to new therapies, as most diseases are at least partly genetic in origin.
Pietzner and his team plan to use a thoughtfully designed strategy that involves artificial intelligence (AI) to process huge volumes of data to track down disease-relevant genes on a large scale, thereby identifying specific targets for treating common but less studied diseases. “Our objective is to find tiny changes in the genes specific to certain diseases, thereby identifying target structures for innovative medications. We will be forging new paths in the process, linking findings from genome sequencing with electronic health data and using artificial intelligence to search for previously unknown connections between genetics and disease manifestation – connections that could point the way forward for developing new medications,” Pietzner explains.
Now that electronic health data are available, researchers are able for the first time to use anonymized data from millions of people to study diseases systematically and economically. “We assume that when we look at the huge data pools involved, we will see genetic signatures that are typical of certain diseases emerge,” Pietzner says. “Our computer programs are able to identify and visualize patterns in a wealth of data that would be unmanageable for us without AI support. This represents a quantum leap in methodology.”
Information needed to produce proteins is encoded in the genes, which is why Pietzner and his team are interested in these genetic products specifically. With certain diseases, patients are found to have elevated levels of proteins or proteins with altered structures, which could be targets for innovative therapies. It is also possible that new insights into genes associated with risks and their genetic products will reinforce existing therapeutic approaches and offer new developments along those same lines – that, too, would be a gain to research in this field.
ERC Starting Grants
The European Research Council (ERC) currently supports early-career researchers as part of the Horizon Europe framework research program. Grants are awarded to outstanding talent with two to seven years of experience since earning a doctorate who are pursuing an unusual research approach on a topic of their choice. Proposals aimed at building a research group can receive about 1.5 million euros in funding for a five-year term.
Prof. Dr. Birgit Nemec
Institute of the History of Medicine and Ethics in Medicine
Campus Benjamin Franklin
Charité – Universitätsmedizin Berlin
t: +49 30 450 529 040
Dr. Maik Pietzner
Computational Medicine research group
Berlin Institute of Health at Charité
Charité – Universitätsmedizin Berlin
t: +49 30 450 543 132
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