Past Research Projects

Carriers

Genetic Knowledge and the Emergence of a New Biosocial Identity

Funding:        German Research Foundation
Duration:   November 2015 to April 2020
Supervision:   PD Dr. Peter Wehling

The research project investigates whether and to what extent a new biosocial identity and category of what are known as heterozygous carriers of recessively inherited genetic conditions is currently emerging from the interplay of genetic knowledge, novel biomedical technologies, scientific and political discourses, and commercial offers of carrier screening. Recently, technological progress in the field of gene and genome analysis has made it possible to test in a single procedure and at low cost for several hundreds of genetic traits associated with recessive conditions (“expanded carrier screening”). Thus this under-investigated form of being a carrier of genetic mutations, which has not so far attracted much attention from sociologists, is becoming increasingly important for discussions in medicine, health policies and bioethics, and also for commercial providers of such expanded screening tests. It now seems likely that unknowingly, and without themselves being at risk of developing symptoms, most humans are heterozygous carriers of an estimated average number of three to six recessively inherited disease mutations, linked with a 50 percent chance of passing these on to their children. Expanded carrier screening therefore targets all couples who wish to have children and offers them, “ideally” even prior to pregnancy (“preconceptionally”), the opportunity to find out whether both of them are carriers of the same recessive mutation associated with a genetic condition. In this case there would be a 25 percent chance for each of their children of inheriting this mutation from both parents.

If carrier screening is done prior to pregnancy, couples will have a number of options (ranging from not having children at all to preimplantation genetic diagnosis) to prevent the birth of an affected child. The project aims at analysing how the relatively new figure and identity of the “carrier” is shaped by the ascription of specific risks, hopes, options and responsibilities to carriers in medical, bioethical and health policy discourses as well as in commercial “direct-to-consumer” offers on the internet. In addition, using semi-structured interviews, the project is exploring why and how far individuals and couples might be motivated to acquire knowledge of their recessive genetic traits and to what extent they might understand themselves as “carriers”, leading them to behave according to this self-perception. With these objectives, the project is able to substantially contribute to a more nuanced understanding of the social implications and effects of genetic knowledge and biomedical technologies, to the sociological analysis of practices of knowing and not-knowing, and to the emerging public debates on the potential risks and benefits of an essentially novel form of genetic diagnosis with possibly far-reaching consequences.


Personalized Depression?

Investigating the Preconditions, Dynamics and Implications of Psychiatric Biomarker Research

Funding:       German Research Foundation
Duration:   January 2017 to December 2019
Supervision:   Prof. Dr. Thomas Lemke
Researchers:      Jonas Rüppel, Laura Schnieder, Anastassija Kostan

 
Psychiatric research and clinical practice are currently undergoing a transformation many observers regard as a real paradigm shift. While psychiatric interventions so far were based on the experiences, narratives and behavior of patients, they increasingly rely on biological parameters, so-called biomarkers. According to the vision of a “personalized psychiatry”, biomarkers provide for a better diagnosis, prognosis and therapy of psychiatric diseases as they indicate disease severity or susceptibility to treatment thereby allowing to “tailor” interventions to the specific bodily features and biological characteristics of individuals. Today, a few biomarker-tests are already available while others will enter clinical practice in the foreseeable future.

The proposed research project is the first to sociologically investigate this essential transformation. It starts from the thesis that the new focus on biomarkers not only changes professional practices and the disciplinary boundaries of psychiatry, but will also modify institutional structures and practices and result in new concepts of mental illness and health, psychic and corporal processes. Informed by the research design of situational analysis, the project examines the conditions, dynamics and implications of psychiatric biomarker-research using the example of depression.

For this purpose, document and media analysis, expert interviews and ethnographies of psychiatric conferences will provide insights into both the practical contexts and the technical preconditions of biomarker research and the expectations, hopes and fears within the psychiatric arena that go along with the introduction and proliferation of biomarkers for depression. The project contributes to the sociology of psychiatric knowledge by combining an analytics of government following the work of Michel Foucault with insights from Science and Technology Studies. It investigates the historical ontology of depression as a fluid and contested medical classification and seeks to conceptually sharpen the notion of biomarkerization. Beyond the scientific objectives, the research project also provides empirical insights and theoretical reflections highly relevant for the public debate on the societal implications of the vision of a personalized psychiatry.


ARTENGINE

Artificial Life - Anthropological and Sociological Analysis of Life Engineering

Funding:        European Commission
(Marie Skłodowska-Curie Actions)
Duration:   October 2017 to September 2019
Supervision:    Prof. Dr. Thomas Lemke
Researchers:   Dr. Eva Šlesingerová

 
The project addresses contemporary challenges in the field of reproductive and genetic technologies from a sociological and anthropological perspective. It consists of case studies in two European countries: Germany and the Czech Republic. The research will focus on the practices of PGD (preimplantantion genetic diagnosis) in the two countries. There is a lack of reflection on the broader social and cultural context and on the ramifications of life engineering and PGD in the Czech Republic from the anthropological and sociological points of view. These issues remain unanalysed, contributing to a lack of understanding of the specific concerns of the life sciences in the Eastern European and post-socialist context. This proposed project will compare the material practices of PGD in the Czech Republic to the German case.

The research is guided by two main objectives. First, it will explore the social and cultural background and the specific concerns of the use of PGD in the European context. Second, it will analyse the cultural and social practices and forms of agency, naming, defining, and dealing with engineered life within PGD. The research will be based on a broad range of qualitative sociological and ethnographic methods, combining traditional techniques such as semi-structured interviews, ethnographic observations, and critical discourse analysis as well as innovative methods such as digital sociology and multi-sited and multi-species ethnography.


Further Information


Societal Implications of Preimplantation Genetic Diagnosis

Expertise on behalf of the Swiss Federal Office of Public Health

On behalf of the Swiss Federal Office of Public Health (FOPH), Thomas Lemke and Jonas Rüppel reviewed the existing research on the societal implications of Preimplantation Genetic Diagnosis (PGD). The study identifies the following social issues:

1) the forms and fields of application of PGD have expanded, both for new medical indications and for non-medical purposes, 2) PGD tends to reinforce social inequalities and strengthens existing gender asymmetries in family life and reproductive care, and 3) PGD is contributing to a change of normative expectations promoting the idea of genetic and reproductive responsibility. Furthermore, the study delineates potential consequences of PGD for people living with chronic diseases or disabilities and assesses possible trajectories of the technology in question. The document is available for download here.


Download PDF (German)


The Government of Things

Foundations and Perspectives of the New Materialism

Funding:       Volkswagen Foundation (Opus Magnum Grant)
Duration:   April 2015 to September 2016
Book Project:   Prof. Dr. Thomas Lemke

In recent years, social sciences and humanities have developed a renewed theoretical interest in matter and materiality. Central to this “new materialism” is the extension of the concepts of agency, self-organization and power to non-human entities, thereby also calling into question conventional understandings of life.

The book aims at systematically discussing and critically evaluating the innovative potential and explanatory perspectives of the new materialism. I will first present the premises and central ideas of this theoretical project and elucidate how it differs from older versions of materialism. The following chapters introduce three main representatives of this research perspective in greater detail, and compare their respective approaches with one another: Bruno Latour’s project of a “thing materialism” in the context of his anthropology of the moderns, Jane Bennett’s vision of a political ecology of things, and Karen Barad’s proposal of an agential realism. The analysis presents central positions and theoretical options in new materialist scholarship, and simultaneously identifies unresolved theoretical tensions and conceptual ambiguities within this research perspective.

The book then explores the theoretical potential and empirical prospects of a “relational materialism” (Annemarie Mol) based on Foucault’s idea of a “government of things”. My thesis is that exploring and elaborating this posthumanist concept of materiality provides the analytical tools for investigating the interrelatedness and entanglements of men and things, the natural and the artificial, the physical and the moral. This theoretical project will also be instrumental in going beyond the anthropocentric limitations of studies of governmentality and paving the way for a more materialist account of politics.


Demographization of the Political?

An Intersectional Analysis of German Family and Migration Policies since the 1990s

Funding:       German Research Foundation
Duration:   June 2014 to December 2018
Supervision:   Dr. Susanne Schultz

This DFG research project examines the increasing importance of demographic knowledge within German family and migration policies since the mid-1990s. The aim is to analyze the scope, elements and dynamics of a new population policy with special attention to the scientific arguments offered for it. The project focuses on the regulation of fertility and immigration as those elements of the new demographic policy which are debated and/or implemented in order to influence actively the size and composition of the national population. By integrating family and migration policies it becomes possible to develop an intersectional perspective on the current biopolitics of the population, without ignoring important differences between these policy fields and the role of demographic knowledge within them. The project employs the concept of demographization as a social studies of science concept which makes it possible to analyze scientific problematizations and strategic political solutions as intertwined elements of political rationalities.

In order to evaluate the scope of this concept for political science purposes, the project combines two different methodological approaches. In the first phase the project uses an inductive approach inspired by interpretative policy analysis. The project maps actors and institutions through time, and analyzes the discourses of demographic policy consultancy since the 1990s: first on the basis of documents from studies conducted within ministries, contract research and consulting think tanks, and second on the basis of qualitative interviews with key actors. The aim of this phase is to identify the range of prevailing demographic rationalities in both policy fields and how they have changed through time. In a second phase the project shifts to a more deductive state-theoretical perspective in order to reconstruct the integration of demographic rationalities within the hegemonic conflict constellations of the two policy fields. The aim is to understand demographization as part of broader processes of hegemony building and to analyze the dynamics, and also the limits, of demographic rationalities within current German politics.

In the last phase the project uses the outcomes of the project in order to debate and to develop approaches to intersectionality within state theory. This phase aims to investigate which demographic concepts and statistical calculations are applied in order to select and categorize certain groups of the population, which strategies of government are debated and implemented with respect to these groups, and how categories of gender, class ethnicity/race/nationality within the two policy fields and across them intersect here.


Genetic Discrimination in Germany

An Investigation into Experiences of Unfair and Adverse Treatment due to Risks of Genetic Diseases

Funding:       German Federal Ministry of Education and Research
Duration:   January 2011 to December 2013
Supervision:   Prof. Dr. Thomas Lemke, Prof. Dr. Katharina Liebsch (Helmut-Schmidt University Hamburg)
Researchers:   Ulrike Manz, Tino Plümecke

 
Over the past twenty years, a series of empirical studies in different countries have shown that our increasing genetic knowledge leads to new forms of exclusion, disadvantaging and stigmatisation. The term "genetic discrimination" has been coined to refer to a (negative) differential treatment of individuals on the basis of what is known or assumed about his or her genetic makeup. Reported incidents include disadvantages at work, problems with insurance policies and difficulties with adoption agencies. While genetic discrimination is a heated topic in political and media debates in Germany, it still remains a non-issue in the academic literature.

The project will provide the first comprehensive and systematic empirical analysis of genetic discrimination in Germany. It will focus on groups of individuals with family histories, genetic risks or genetic predispositions, who at the time of any alleged discrimination were asymptomatic of the genetic condition or disorder. To cover the range of discriminatory practices, we propose to select four exemplary diseases: Familial adenomatous polyposis, breast and ovarian cancer, hereditary haemochromatosis and cystic fibrosis. The conditions selected represent the diversity and range of heritable disorders including dominant and recessive disorders, treatable and untreatable disorders, highly penetrant conditions and those with a low penetrance, conditions with a very characteristic phenotype and those with variable symptoms.

Asymptomatic individuals will be recruited on the basis of a questionnaire distributed by support groups and clinical genetic services. Semi-structured interviews will be conducted with those reporting incidents of genetic discrimination. The results of the project will make it possible to document how genetic discrimination affects individual and family life, and to explore the strategies individuals employ to manage and minimise the risk of genetic discrimination.


DNA and Immigration

 
Funding:        German Federal Ministry of Education and Research, Austrian Research Promotion Agency, Academy of Finland
Duration:   Februar 2010 bis to January 2013
Supervision:   Prof. Dr. Thomas Lemke
Researchers:   Dr. Torsten Heinemann

The project aims at exploring the social, political and ethical implications of DNA analysis for family reunification in three European countries - Austria, Finland, and Germany. It is part of the ELSA-GEN initiative for collaborative research projects on ethical, legal, socio-cultural and economic aspects of genomics and related sciences.


Enacting Pregnancy

The Role of the Sonogram in Prenatal Diagnosis

Funding:        German Research Foundation
Duration:   January 2010 to September 2013
Supervision:   Dr. Eva Sänger
Researchers:   Sarah Dionisius

 
Ultrasound fetal imaging is a screening device that is widely embraced by medical sonographers and pregnant women in Western Europe and North America. In particular, Germany is an interesting case because in no other country, women so often undergo routine ultrasound examinations during their pregnancy. The project explores the influence of ultrasound technology on parents-to-be.  Drawing on interviews with pregnant women, midwives and obstetrics as well as participant observation at ultrasound examinations, the project seeks to uncover the cultural meaning and the social consequences of these medical visualizations during pregnancy, especially for the embodied transition to parenthood. The project contributes to ongoing debates concerning the changing forms of embodiment through biomedical technologies from a gender perspective.