@article{3c6f10ae46ff40ffb020d53af04bc367,
title = "“Think positively”: Parkinson{\textquoteright}s disease, biomedicine, and hope in contemporary Germany",
abstract = "Narratives of hope shape contemporary engagements with Parkinson{\textquoteright}s disease. On the one hand, a “biomedical narrative of hope” promises that biomedical research will help to transform this treatable but incurable disease into a curable one in the future. On the other hand, a more individual “illness narrative of hope” encourages patients to influence the course of Parkinson{\textquoteright}s disease by practicing self-care and positive thinking. This article asks how these two narratives of hope interact. It bases its argument on an analysis of data from 13 focus groups conducted in Germany in 2012 and 2014 with patients with Parkinson{\textquoteright}s disease and their relatives. Participants were asked to have their say on clinical trials for advanced therapies for Parkinson{\textquoteright}s disease and, while doing so, envisioned their biosocial selves in the present and the future. Three “modes of being” for patients were drawn from this body of data: a “users on stand-by” mode, an “unengaged” mode, and an “experimental pioneers” mode. Both narratives of hope were important to all three modes, yet they were mobilized at different frequencies and also had different statuses. While the biomedical narrative of hope was deemed an important “dream of the future” that participants passively supported without having to make it their own, the illness narrative of hope was a truth discourse that took an imperative form: having Parkinson{\textquoteright}s disease implied the need to maintain a positive attitude.",
keywords = "biomedicine, clinical trials, Germany, hope, Parkinson{\textquoteright}s disease",
author = "Ingrid Metzler and Paul Just",
note = "Funding Information: The two clinical trials were funded by the European Union{\textquoteright}s 7th framework program; both trials involved brain surgery. One trial involved transplanting cells from aborted fetuses into the brains of patients (Abbott, 2014). The other trial involved implanting a pump into patients{\textquoteright} bodies to regularly deliver doses of growth factors into the brain via a conduit. Hence, both trials sought to channel the hope that particular agents—fetal cells or growth factors—would help revitalize dopamine-producing cells, from the bench to the bedside, via the organizational form of clinical trials. Funding Information: The author(s) disclosed receipt of the following financial support for the research, authorship, and/ or publication of this article: This research was supported by the European Commission{\textquoteright}s 7th Framework Programme—HEALTH [collaborative project “Transeuro, contract number 242003, and “NRT,” contract number 279102]. Funding Information: We are grateful to all participants in the focus groups, who made time to share their thoughts and experiences. Furthermore, we would like to thank Ursula Gottweis and Walburg Steurer for enabling us to use material from focus groups which they have moderated. We are grateful to our former colleagues at the University of Vienna?s Life-Science-Governance Research Platform and the participants in a session at the 4S/EASST conference in Barcelona in August 2016 for comments on earlier drafts of this article. Ulrike Felt helped us at the beginning of the data analysis, and Nik Brown provided very insightful comments on a more advanced stage of the writing process. We are grateful to Sheila Jasanoff, who has pointed us toward the subtle differences in English language, and to Deborah Olivers for copy-editing draft versions of this article. We also wish to thank the anonymous reviewer for the careful work and helpful suggestions. Last but not least, we would like to thank Herbert Gottweis, who has envisioned the initial design of the study on which this article rests. He has passed away before the study was completed. The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This research was supported by the European Commission?s 7th Framework Programme?HEALTH [collaborative project ?Transeuro, contract number 242003, and ?NRT,? contract number 279102]. Publisher Copyright: {\textcopyright} The Author(s) 2017.",
year = "2018",
month = sep,
day = "1",
doi = "10.1177/1363459317715774",
language = "English",
volume = "22",
pages = "483--499",
journal = "Health (United Kingdom)",
issn = "1363-4593",
publisher = "SAGE Publications Ltd",
number = "5",
}