Projects
Privacy Regimes: Variations and Transformations in an age of post genomics (PrivateGen)
Today, large amounts of bioinformation are collected, disseminated and used in collaborative research network for life science. Biobanks are the main institutions for storage of this sensitive data and they are therefore the key insertion points for our study of privacy-related issues in an age of post genomics.
PrivateGen projects investigates the current regimes – which encompass statutory regulation (both national and international), self-regulation, and technology-based privacy instruments – in relation to post genomic research in general and more specifically in relation to the creation of large scale life science infrastructures in Austria, Finland, and Germany. Each national case will be first studied from multiple disciplinary angles by the consortium’s four subprojects (juridical, ethical, sociological, and political science) and subsequently integrated into a coherent governance framework.
Furthermore, the privacy related complexity of these endeavours is amplified by scientific collaboration operating in a transnational scale. Case studies of PrivateGen reflect this trend, since the cases under investigation play an important role in an effort to create the pan-European Biobanking and Biomolecular Resources Research Infrastructure (BBMRI). They are therefore excellent locations to study particular dynamics of privacy regimes that occur on a transnational scale.
The Finnish research team is responsible for conducting the sociological substudy of the project. In it, the subject of study are the ways by which the exchange of biobank data with population registers and patient health care records bears upon the attitudes of participants in biobanking initiatives toward these practices. It will look at the ways different groups of people, (research participants, experts, researchers, etc.) relate to different types of bioinformation (e.g., lifestyle, health related data, biomaterials) in three cases in Austria, Germany, and Finland. It will also trace variations in the patterns of attitudes between these different segments toward national and transnational regimes of exchange. The subproject will also explore the possibility of people controlling the way their personal information can be used and exploited in register and biobank research, and the challenges this poses for biobank researchers. It will also draw on the studies of governance and juridical aspects in relation to the possibility of inscribing public attitudes into legislative and governance issues surrounding biobanking. The normative issues investigated in the ethical subproject will also be reflected in the sociological study by asking to what degree public attitudes should guide the development of research infrastructures or whether existing legal and ethical frameworks are adequate.
The director of the consortium is professor Peter Dabrock (Friedrich-Alexander University, Erlangen and Nürnberg). The study of biobank governance is directed by professor Herbert Gottweis (University of Vienna) and the substudy on legal aspects by professor Jochen Taupitz (University of Mannheim).
The sociological substudy in Finland is directed by professor Ilpo Helén (University of Helsinki) is in charge, with Dr Karoliina Snell as researcher and Elina Helosvuori as research assistant.
The project is funded by the Academy of Finland, the German Federal Ministry of Education and Research, the Austrian Research Promotion Agency (FFG) and the GEN-AU initiative.
DNA and immigration: Social, political and ethical implications of DNA analysis for family reunification (IMMIGENE)
Since the early 1990s, many countries have been using more restrictive policies to limit the number of immigrants who cross their borders. This change in immigration policies has affected family reunification. Today, many European and non-European countries are using genetic testing to verify that those applying to be reunited as a family are indeed related.
The project focuses on Austria, Finland and Germany. These countries represent three different ways of adopting genetic testing for immigration purposes: as a political non-issue (Austria), in the form of a current discussion on including this issue in the law on genetic diagnosis (Germany), and as a well-established and regulated legal and political practice (Finland).
The general objective of the IMMIGENE project is to reconstruct the historical process and the institutional logics of DNA testing in a comparative and philosophically informed perspective. It will identify and analyze societal, political, legal and ethical issues raised by the use of genetic technologies in the context of immigration policy and provide recommendations for policies and legal regulations.
The work needed to reach these objectives is divided into three distinct steps. The first stage draws together legal documents, codes of guidance, reports, policy statements, and information from expert interviews relevant to the specific historical and institutional trajectories in using genetic testing for immigration decisions/family reunification. The second step consists of identifying the ethical, societal and political challenges at stake, focusing on interviews with representatives of immigration bureaus, lawyers, and human rights activists as well as family members who have provided genetic material in the course of immigration decisions. On the basis of this analysis, we will in the third part of the project develop policy recommendations for ways in which legal regulations and forms of governance could be put in place to regulate immigration processes and to protect family life and privacy issues.
While the use of genetic technologies for immigration purposes is sometimes a heated topic in political and media debates, it remains a non-issue in the scientific literature. This project will provide the first comprehensive study of this field and it will enable the evaluation and comparison of different policy regimes and their advantages and problems. Hence, the project will contribute to the scientific field by exploring the diverse conditions and consequences of genetic testing in the context of immigration. Furthermore, the results of the project will also inform immigration policies with the goal of promoting a balanced relationship between data protection and privacy concerns and political interests in regulating immigration and preventing fraudulent family reunification.
The Finnish substudy has two arms. The research line related to policy-making, politics and administration focuses on the current role and future prospects of DNA testing discussed above. The question is whether the DNA tests will develop a central device of control or will it remain in its currents use as a technique solving specific problems of Somali refugees’ family reunification. The answers are searched for from two contexts: first, regarding the emerging new directions of the Finnish immigration policy and, second, regarding the establishment and use of genetic databases of population for forensic and other surveillance purposes.
The anthropological arm of the study focuses meaning and influence of genetic information in the context of culture and everyday life. Two issues are of particular interest. The first are the ways biological and social categories family and kinship become contested and disputed in a context of ‘immigrant life’, defined by diaspora and being a subject to the authority of the Finnish immigration administration. In addition, interpretations of genetic information by the refugees themselves in the context of immigrant life and influences of that information to their lives are crucial topics of this study.
The leader of the project is Professor Thomas Lemke (Goethe-University, Frankfurt am Main). The Austrian project is led by Dr Ursula Neue (University of Vienna) and the philosophical project by Dr Martin Weiss (University of Klagenfurt). In Finland, professor Ilpo Helén (University of Helsinki) is in charge, with Dr Anna-Maria Tapaninen as researcher and Elina Helosvuori as research assitant.
The project is funded by the Academy of Finland, the German Federal Ministry of Education and Research, the Austrian Research Promotion Agency (FFG) and the GEN-AU initiative.
Patients, business and the state – translating health information into sustainable benefits
This research that is headed by Dr. Aaro Tupasela examines governance challenges posed by the utilization and translation of healthcare information, including information derived from biobank research and genetic databases into globally sustainable and socially robust healthcare products and services. The starting point of the study is a 1) comparative analysis of governance and engagement regimes in Finland, England, US, Canada and Iceland, as well as supranational actors, to manage the collections, storage, use and commercialization of healthcare and genetic data, 2) exploring the implications that new patient engagement strategies have for the creation and deployment of intangible assets and value creation within the Finnish innovation system, and 3) identifying and scrutinizing critical elements within the patient-business-state axis that play a role in the sustainability of value creation regimes that can be deployed by companies. The study builds on previous research and expertise on consent practices in biobanking (02-07), and public perceptions of biobanking (07-09).
The research is funded by Tekes (2013 -2014).
Constituting Difference Through Genetics – From Historical to naturalistic Explanations of Population Variation.
Dr Aaro Tupasela’s postdoctoral research project begins with the simple question: How does one define and characterize the borders and boundaries which constitute a population? What are the characteristics according to which groups of people can be said to belong together or differ from one another? The question of boundaries within human populations has been a central element within sociological, historical and anthropological studies of communities, identities and the classification and categorization of people using different criteria.
Recently this question has been tackled within the natural sciences, namely within population genetics, through the analysis and identification of genetic differences among various human populations. The constitution of difference through genetic markers is playing an increasingly important role in biomedicine as it relates to our understanding of disease, the development of public health policies, as well as personalized medicine. This research explores the ways in which new knowledge of genetic variations in population structure creates – if at all – new social categories and communities, the ways in which such population groupings change our understanding of disease and then enter the practices associated with healthcare in Finland.
The goal is to explore the relationship between naturalistic accounts of population structure and classification from three perspectives.
1. In what ways, if any, are new findings on genetic variation and population structure influencing the way patients and patient organizations understand disease in Finland? Do such technologically informed conceptions of variation and difference have any bearing on already established notions of communities and populations?
2. Proponents of these new technologies warn against a priori assumptions of existing groupings, yet they continually refer to such existing grouping in their own studies due to the lack of other alternatives. What is the interplay and interdependence between historical/geographical conceptions of population borders and new genetic conceptions of population groupings? Is it possible to talk of genetics of populations without its social and historical context?
3. What is the significance of such studies from a health and medical perspective? How does knowledge of difference and variation among populations come to play a part in developing new medications and healthcare policies, and what role does it play in the way disease is understood in populations?
Such perspectives are important in developing a more nuanced understanding of the interplay between historical and naturalistic explanations of difference and variation in Finland. It also contributes to the international theoretical discussion in sociology surrounding the role of genetics in classifying and categorizing populations and disease.
The research is funded by the Academy of Finland.