Key Research Interests and Expertise

Participation and decision making of patients in experimental medicine

I am currently researching the impact of gene therapy amongst cancer patients and their attitudes concerning consent to medical experiments. The notion of informed consent will have to be rewritten with the advent of new experimental medicine. This research is designed to illustrate patient’s attitudes towards scientific research in medicine, especially concerning medical scientific trials. The main research question is what leads patients to participate in clinical trials if they know that the outcome of the trial might not beneficial. Questions of altruism are being raised in this context. This research should help medical practitioners, scientists, and patient advocacy groups to come to a better understanding on decision-making progress.

Accountability, responsibility, and uncertainty in biotechnologies:

My doctoral dissertation interrogated the change of knowledge distribution in the medical sciences in a contemporary Western setting. By choosing a case study of an autoimmune disorder (SLE), I traced the genealogy of this autoimmune disorder that have shifted in accordance with developments within bioscientific research of the 20th century. These conceptualisations were not only redefined by developments in bioscientific research, but also through the influence of the public sector (e.g. the Internet and self-help groups). The dissertation deals with the consequences of these developments and shows the impact of public opinion on the ‘hard’ sciences’ as well as on patient’s awareness of science and medicine.

Ethics committees, ‘expert’ knowledge and property rights of patients

My interest is how ethics committees are actually anticipating any kind of risk and thus create a completely new situation of 'forced transparency'. I am not only interested in what lies behind this current trend to make research and clinical trials public, but I also investigate the geneticist’s demand that patients have to become experts of their affliction and their treatment options. The collaboration between geneticists and patients should lead to an acknowledgement of intellectual property rights of the patient. At the moment, the integrity of the patient’s personhood is only guaranteed when it comes to property rights of tissue. The collaboration of patients in their treatment (as exemplified in gene therapy) should thus lead to a new understanding of scientific authorship and intellectual property rights.

The politics of art and science collaborations

The Wellcome Trust Sci/Art programme has given me a research and development grant (‘Topographies of the Possible’) which I am currently holding together with the research group Xperiment!, based in Vienna. This grant enables us to develop strategies to engage with and depict human suffering through artistic lenses. Parts of this grant has been used to develop the installation ‘What is a Body, what is a Person’ that deals with everyday lives of people in vegetative states. The installation has been shown in the exhibition ‘Making Science Public’ at the ZKM in Karlsruhe, which was curated by Bruno Latour and Peter Weibel. We are currently working on how to interpret the notion of ‘informed consent’ from an artistic point of view.

Research Group Membership

Primary Care Group in the School of Medicine, Health Policy and Practice

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