Re-examining medical modernization: framing the public in Finnish biomedical research policy

Despite recent evidence that suggests that knowledge production within the medical community is increasingly based on knowledge-making coalitions or what some have called the co-production of knowledge, there remains a strong expert led policy agenda in many countries in relation to human genome research. This article reports on the role of experts in defining the scope of discussion in relation to the biomedical use of human tissue sample collections or biobanks in Finland using the case of the Genome Information Center. It is argued that the rhetorical strategies should not be understood simply as subversive tactics, but rather as ways of engaging the public within particular contexts of creating commercial expectations and visions which are easier to negotiate from a policy perspective

The Genetic Imagination : Imaging Populations and the Construction of Nationhood

Peer reviewe

Suostumuskäytännöt ja biolääketieteellisen tiedon tuotanto kudostalouksissa

The use of human tissue sample collections has become an important tool in biomedical research. The collection, use and distribution of human tissue samples, which include blood and diagnostic tissue samples, from which DNA can be extracted and analyzed has also become a major bio-political preoccupation, not only in national contexts, but also at the transnational level. The foundation of medical research rests on the relationship between the doctor and the research subject. This relationship is a social one, in that it is based on informed consent, privacy and autonomy, where research subjects are made aware of what they are getting involved in and are then able to make an informed decision as to whether or not to participate. Within the post-genomic era, however, our understanding of what constitutes informed consent, privacy and autonomy is changing in relation to the needs of researchers, but also as a reflection of policy aspirations. This reflects a change in the power relations between the rights of the individual in relation to the interests of science and society. Using the notions of tissue economies and biovalue (Waldby, 2002) this research explores the changing relationship between sources and users of samples in biomedical research by examining the contexts under which human tissue samples and the information that is extracted from them are acquired, circulated and exchanged in Finland. The research examines how individual rights, particularly informed consent, are being configured in relation to the production of scientific knowledge in tissue economies in Finland from the 1990s to the present. The research examines the production of biovalue through the organization of scientific knowledge production by examining the policy context of knowledge production as well as three case studies (Tampere Research Tissue Bank, Hereditary Non-polyposis Colorectal Cancer and the Finnish Genome Information Center) in which tissues are acquired, circulated and exchanged in Finland. The research shows how interpretations of informed consent have become divergent and the elements and processes that have contributed to these differences. This inquiry shows how the relationship between the interests of individuals is re-configured in relation to the interests of science and society. It indicates how the boundary between interpretations of informed consent, on the one hand, and social and scientific interests, on the other, are being re-drawn and that this process is underscored, in part, by the economic, commercial and preventive potential that research using tissue samples are believed to produce. This can be said to fundamentally challenge the western notion that the rights of the individual are absolute and inalienable within biomedical legislation.Biopankkitoiminta haastaa perinteiset näkemykset yksilön oikeuksista Suhde yksilön oikeuksien ja yhteiskunnallisten intressien välillä on muuttumassa kaupallistamispaineiden alla Ihmiskudoksen lääketieteellisestä käytöstä on muodostunut merkittävä osa biolääketieteellistä tutkimusta viime vuosina. Näytteiden kerääminen, käyttö ja tehokkaampi hyödyntäminen ovat samalla herättäneet paljon poliittista mielenkiintoa kudoskokoelmia ja niihin liitettyjä terveystietoja kohtaan sekä kansallisesti että kansainvälisesti. Lääketieteellinen tutkimus pohjautuu suurilta osin tutkittavan ja tutkijan väliseen suhteeseen, joka perustuu suostumukseen, yksityisyyden vaalimiseen sekä tutkittavan autonomiaan. Jälki-genomisella aikakaudella käsityksemme suostumuksesta, yksityisyydestä sekä autonomiasta ovat kuitenkin muuttumassa suhteessa meistä kerättyihin näytteisiin ja terveystietoihin. Aaro Tupaselan 20.11.2008 Helsingin yliopistossa tarkastettavassa väitöskirjassa Consent Practices and Biomedical Knowledge Production in Tissue Economies tarkastellaan yksilön oikeuksien muutoksia tieteen ja yhteiskunnan muutospaineiden varjossa. Väitöstutkimuksessa tarkastellaan kudosnäytteiden luovuttajien ja käyttäjien välistä suhdetta biolääketieteellisessä tutkimuksessa katsomalla erilaisia tapauksia joiden yhteydessä kudosnäytteitä ja niihin liitettäviä terveystietoja kerätään ja hyödynnetään Suomessa. Tutkimus analysoi miten tulkinnat yksilön oikeuksista, eritoten suostumuksesta, ovat muuttumassa suhteessa tieteellisen tiedon tuotannon tarpeisiin sekä poliittisiin paineisiin suomalaisissa kudostalouksissa 1990-luvun taitteesta tähän päivään. Tätä tarkeastelua tehdään poliittisen kontekstin analyysin avulla, sekä kolmen tapaustutkimuksen kautta, joissa tarkastellaan leikkausjätteen käyttöä, suurien epidemiologisten kokoelmien hyödyntämistä sekä periytyvän paksusuolisyövän tutkimukseen liittyviä haasteita Suomessa. Tutkimus osoittaa miten suostumuksen tulkinnoista on tullut eriäviä sekä tuo esiin ne tekijät jotka ovat vaikuttaneet näihin eroavaisuuksiin. Tarkastelussa ilmenee miten suhde yksilön oikeuksien ja tieteellisten ja yhteiskunnallisten intressien välillä on muuttumassa siten että enenevässä määrin yhteiskunnalliset ja tieteelliset intressit painavat päätöksenteossa. Yhteiskunnallisissa ja tieteellisissä argumenteissa taas painottuvat yhä enemmän taloudelliset, kaupalliset ja ennaltaehkäisevät odotukset, joita liitetään kudosnäytteistä saatavaan hyötyyn. Tämä muutos voidaan nähdä perustavanlaatuiseksi muutokseksi länsimaisessa käsityksessä yksilön oikeuksista absoluuttisina ja luovuttamattomina oikeuksina

The Privatization of Public Knowledge - Innovation Policy and Intellectual Property Rights at the University of Helsinki

Only abstract. Paper copies of master’s theses are listed in the Helka database (http://www.helsinki.fi/helka). Electronic copies of master’s theses are either available as open access or only on thesis terminals in the Helsinki University Library.Vain tiivistelmä. Sidottujen gradujen saatavuuden voit tarkistaa Helka-tietokannasta (http://www.helsinki.fi/helka). Digitaaliset gradut voivat olla luettavissa avoimesti verkossa tai rajoitetusti kirjaston opinnäytekioskeilla.Endast sammandrag. Inbundna avhandlingar kan sökas i Helka-databasen (http://www.helsinki.fi/helka). Elektroniska kopior av avhandlingar finns antingen öppet på nätet eller endast tillgängliga i bibliotekets avhandlingsterminaler.This paper proposes to discuss the shortcomings of three popular science and technology study models - the Triple Helix, Mode 2 and Entrepreneurial Science. It also focuses on the development of supra-national and national science and technology policies and the role they have played in the commercialization of university research. The three models and innovation policies are analyzed through a case study of Helsinki University Licensing Ltd. (HUL), a technology transfer company founded in 1992 by the University of Helsinki and the Finnish National Fund for Research and Development (Sitra). The purpose of the company is to patent and license innovations developed at the University of Helsinki. The paper identifies contradictions that emerge in the patenting of research developed at the University of Helsinki, Finland's largest public research university. It deploys the concepts of technological systems, diffusion of innovations and national ideologies to problematize the ubiquity of current models and policies. The study draws on interview material, policy documents, HUL documents, patenting statistics and newspaper articles. These sources are used to argue that the three models and current innovation policy lack a critical approach in looking at the technological development of the biosciences in Finland. Innovation policies are analyzed on the supra-national and national levels and compared to the strategies that have been adopted at the University of Helsinki during the 1990s. The assumptions set forth by the models are critiqued in light of obstacles HUL has encountered with patenting and licensing. The study concludes that current innovation policies are contradictory because they encourage the broad diffusion of university research and its patenting at the same time. The patenting of research confers monopoly rights over innovations and is an effective tool for the private industry to minimize risk. At the same time, however, competition and the dissemination of information are compromised. The role of individual actors is identified as an important component of the innovation process in Finland and the success of HUL. Professional know-how is a key factor in attracting business from researchers. Finally, the models are too descriptive and neglect to account for variation among different technological systems

Concordance as evidence in the Watson for Oncology decision-support system

Machine learning platforms have emerged as a new promissory technology that some argue will revolutionize work practices across a broad range of professions, including medical care. During the past few years, IBM has been testing its Watson for Oncology platform at several oncology departments around the world. Published reports, news stories, as well as our own empirical research show that in some cases, the levels of concordance over recommended treatment protocols between the platform and human oncologists have been quite low. Other studies supported by IBM claim concordance rates as high as 96%. We use the Watson for Oncology case to examine the practice of using concordance levels between tumor boards and a machine learning decision-support system as a form of evidence. We address a challenge related to the epistemic authority between oncologists on tumor boards and the Watson Oncology platform by arguing that the use of concordance levels as a form of evidence of quality or trustworthiness is problematic. Although the platform provides links to the literature from which it draws its conclusion, it obfuscates the scoring criteria that it uses to value some studies over others. In other words, the platform "black boxes" the values that are coded into its scoring system.Peer reviewe

The Nordic Data Imaginary

The Nordic countries aim to have a unique place within the European and global health data economy. They have extensive nationally maintained and centralized health data records, as well as numerous biobanks where data from individuals can be connected based on personal identification numbers. Much of this phenomenon can be attributed to the emergence and development of the Nordic welfare state, where Nordic countries sought to systematically collect large amounts of population data to guide decision making and improve the health and living conditions of the population. Recently, however, the so-called Nordic gold mine of data is being re-imagined in a wholly other context, where data and its ever-increasing logic of accumulation is seen as a driver for economic growth and private business development. This article explores the development of policies and strategies for health data economy in Denmark and Finland. We ask how nation states try to adjust and benefit from new pressures and opportunities to utilize their data resources in data markets. This raises questions of social sustainability in terms of states being producers, providers, and consumers of data. The data imaginaries related to emerging health data markets also provide insight into how a broad range of different data sources, ranging from hospital records and pharmacy prescriptions to biobank sample data, are brought together to enable "full-scale utilization" of health and welfare data.Peer reviewe

Rethinking Therapeutic Misconception in Biobanking : Ambivalence Between Research and Treatment

Peer reviewe

Shortcut to success? : Negotiating genetic uniqueness in global biomedicine

Since the sequencing of the human genome, as well as the completion of the first Human Genome Diversity Project, the benefits of studying one human population over another has been an ongoing debate relating to the replicability of findings in other populations. The leveraging of specific populations into research markets has made headlines in cases such as deCode in Iceland, Quebec Founder Population, and Generation Scotland. In such cases, researchers and policy makers have used the genetic and historical uniqueness of their populations to attract scientific, commercial and political interest. In this article, we explore how in countries with population isolates, such as Finland, the researchers balance considerations relating to the generalization and replicability of findings in small yet unique research populations to global biomedical research interests. This highlights challenges related to forms of competition associated with genetics research markets, as well as what counts as the right' population for genetic research.Peer reviewe

Ethics of medical AI: the case of Watson for Oncology

Peer reviewe