Niclas Hagen

Genetics and democracy-what is the issue?

Current developments in genetics and genomics entail a number of changes and challenges for society as new knowledge and technology become common in the clinical setting and in society at large. The relationship between genetics and ethics has been much discussed during the last decade, while the relationship between genetics and the political arena—with terms such as rights, distribution, expertise, participation and democracy—has been less considered. The purpose of this article is to demonstrate the connection between genetics and democracy. In order to do this, we delineate a notion of democracy that incorporates process as well as substance values. On the basis of this notion of democracy and on claims of democratisation in the science and technology literature, we argue for the importance of considering genetic issues in a democratic manner. Having established this connection between genetics and democracy, we discuss this relation in three different contexts where the relationship between genetics and democracy becomes truly salient: the role of expertise, science and public participation, and individual responsibility and distributive justice. As developments within genetics and genomics advance with great speed, the importance and use of genetic knowledge within society can be expected to grow. However, this expanding societal importance of genetics might ultimately involve, interact with, or even confront important aspects within democratic rule and democratic decision-making. Moreover, we argue that the societal importance of genetic development makes it crucial to consider not only decision-making processes, but also the policy outcomes of these processes. This argument supports our process and substance notion of democracy, which implies that public participation, as a process value, must be complemented with a focus on the effects of policy decisions on democratic values such as distributive justice.

Editorial: Genetics and Democracy

The starting point for the network of Genetics and Democracy at Lund University was a discussion among colleagues on how new research results would affect the possibilities of predicting not only genetic variants in relation to disease but also future behaviour. This discussion was launched when the Nuffield Council on Bioethics in 2002 published its report “Genetics and Human Behaviour—the ethical context”; the subject of the report being human behaviour in the “normal range”, as opposed to traits that are defined as illnesses or diseases (Nuffield Council on Bioethics 2002). Our initial discussions within the group came to be focused upon behaviour and skills, but we soon widened our scope and tried to look into other aspects of genetic issues in relation to legislation, public health, public understanding of science, as well as public participation in science. It became apparent to us that many of these issues were connected to fundamental values in Western societies and subsequently to the notion of democracy and democratic rule and governance. In 2007, these discussions led to the formation of the network “Genetics and Democracy at Lund University” with members from the fields of clinical genetics, political science, history, ethnology, sociology, and population genetics applying for grants for a series of lectures on this topic. Since 2007, 14 seminars have been held with distinguished international speakers (Box 1), some of whom have contributed with their presentations as papers to this special issue of the Journal of Community Genetics. We also held an internal half-day seminar presenting ongoing research in the broad field of Genetics and Democracy within Lund University. Box 1. Lecturers and titles in the seminar series Genetics and Democracy at Lund University 2007–2012 Seminars 11 and 12 were held in collaboration with the Learning and Media Technology Studio, University of Gothenburg (www.letstudio.gu.se) aPresented as papers in this issue of Journal of Community Genetics It was our goal to explore how legislators and social welfare and health care systems are coping with advances in genetic science and its use for the good of citizens. Democratic considerations pertained not only to political decision making and accountability but also to the possibilities of the inclusion of concerned parties for a plurality of views to be considered, as well as to the outcomes of those processes. Our series of lectures provides some snapshots from different areas and gives an overview of the broad field of scientific advances in genetics, if by no means a full one. We, the guest editors of this issue of the Journal of Community Genetics, are thankful to the Editor-in-chief and the Publisher for allowing us to introduce some of the presentations from this seminar series.

The lived experience of Huntington’s disease: A phenomenological perspective on genes, the body and the lived experience of a genetic disease:

The purpose of this article is to explore the intersections between genes, the body and the lived experience of a genetic disease. This article is based on empirical material from a study on how individuals affected by Huntington’s disease experience their everyday life. This study identified two themes that represent and capture the experience of the affected individuals. The themes are (1) noticing symptoms in everyday life and (2) neither health nor disease. The analysis of the empirical material was performed by employing a theoretical framework based on phenomenology. The findings of this study showed that the lived experiences among individuals affected by Huntington’s disease were both fluid and dynamic in their nature. Furthermore, the analysis of the empirical material suggests that this fluid and dynamic character can be linked to a dimension that revolves around the intersections between genetics and the body. Following phenomenologist Drew Leder’s outline of the divergence between the invisible and the visible features of the body, the analysis of the empirical material suggests that the mutated gene that causes Huntington’s disease can be seen as a phenomenological nullpoint. It is important that the healthcare system acknowledges and addresses the lived experiences that are discussed in this article, particularly, as the use of genetics and genetic testing becomes more widespread usage within medicine.

F05 The experience of a genetic brain disorder: cultural and social perspectives on huntington's disease

Background Apart from the medical effects present in Huntingtons Disease (HD), the lives of affected individuals are also influenced by cultural and social frameworks within the society. These aspects give rise to new meanings and practices among affected individuals. Aims The aim of this interdisciplinary research project between the medical and cultural sciences is to increase the capacity to understand and meet challenges offered by a hereditary neurodegenerative brain disorder such as HD. The focus of the study is to investigate how individuals affected by HD create new meanings and practices in relation to themselves, medical research, clinical practice, as well as the society at-large. Methods In the first phase of the project, semi-structured in-depth interviews were conducted with individuals affected by HD (n=10), using qualitative methods based on phenomenology. Key-features of the participants’ experiences and practices in relation to HD were identified, which were subsequently analysed by means of cultural and social theory. Results Participants experience feelings of dissociation from social networks, as well as feelings of frustration and a lack of understanding, predominantly in relation to care-taking and assistance, but in some cases also in conjunction to predictive test decision-making. Conclusions The perceived feeling of dissociation points towards stigmatisation and change in social identity for HD-affected individuals, which is linked to cultural and social frame-works specifying such notions as normality, abnormality, purity and danger within western culture. The expressed feelings of frustration and lack of understanding can se been as a separation and rationalisation of the participants’ everyday life-world by various societal spheres.