Center for Research on Activity,

Development and Learning CRADLE

University of Helsinki

RESEARCH PLAN

Juha Leminen Biobank, Information

Technology Tools and
the Transformation of
Collective Childhood
Diabetes Research in
Finland

Working Papers 5/2010

Biobank, Information Technology
Tools and the Transformation of
Collective Childhood Diabetes Research
in Finland
Research plan

Juha Leminen
Center for Research on Activity, Development and Learning CRADLE
University of Helsinki

juha.leminen@helsinki.fi



Contents
Introduction
1.1 The Finnish Childhood Diabetes Research Network as Research Site
1.2 Biobank and Changes in Biomedical Research; Questions for Science, Technology and
Society
1.3 The Human Genome Project as a Turning Point in Biomedical Research
2. What is Diabetes?
2.1 A Controversial Concept of Diabetes
3. The DIPP Project as a Research Object
3.1 Research Questions
3.2 Research Sites
3.2.1 Site 1: Biobank Collection & Maintaining Work (Oulu group)
3.2.2 Site 2: Metabolomics Research Group (VTT, QBIX)
4. Theoretical Approach
4.1. Cultural Historical Activity Theory: Object, Tool and Mediation
4.2. From Lab Studies to Biomedical Platforms and Regulatory Objectivity
4.3 Scopic Systems as New Kinds of Infrastructures in Information Technologies
4.3.1 Global Interactionism and New Mediational Means of Information Technologies
Related Work
4.4 Ethical Issues and the Governance Of Human Tissue Collections
5. Research Design, Data and Methods
References
Introduction
1.1 The Finnish Childhood Diabetes Research Network as Research Site

Type 1 Diabetes (T1D) known as childhood diabetes, is one of the most common

insulin dependent chronic diseases among children, and it is becoming more common

worldwide. The annual incidence of childhood-onset T1D has increased 4-fold from

the early 1950s in Finland, where it is the highest in the world: 50 out of 100,000

children develop T1D before the age of 15. The incidence of T1D is now a worrying

trend, because it has doubled in the past 10 years in Europe and the USA. It has been

diagnosed more than before in children younger than 5 years old (see Ma & Chan

2009, 529-530). The pathogenesis model of childhood diabetes is known, but still

today the diabetes research community hasnt discovered the main reason causing the

disease. There is no vaccine available to prevent T1D.

Finlands Diabetes Prediction and Prevention Project (DIPP) was founded in 1994. In

the DIPP Project, newborn infants are screened for genetic susceptibility to T1D and

followed up for the emergence of Type 1 Diabetes-associated autoantibodies. A

screening result that shows that a child has a genetic susceptibility to T1D, may worry

the parents, but for them its better to be aware of the risk. The families that partici-

pate in the study have to give their written informed consent. The parents of the child-

ren in the DIPP Study have reported that they were glad that they had participated

(Simonen et al. 2006). T1D research is organized in Finland between three

universities (Turku, Tampere and Oulu), a various funding agencies and research

centres (VTT - Technical Research Centre of Finland) and local research laboratories.

1
I study how Type 1 Diabetes (T1D) research has been established as a collaborative

research network. Lately, the large human tissue collections and the development of

research methods of the Diabetes Prediction and Prevention Project (DIPP) have

opened up new research areas in the study of autoimmunity and the role of microgut

biota in childhood diabetes. In fact, the DIPP tries configuring scientific facts to

establish what disease phenotype is the cause of T1D. The DIPP is a large research

community, which has built up infrastructures of biobanks and databases since 1994.

The use of new tools makes it possible to create and utilize bio-informational know-

ledge and develop T1D care. In the DIPP children have been studied since 1994 in

three different university hospitals. I present how the research culture of the DIPP has

developed the screening method and research hypotheses of various research groups:

from genetic screening to collecting blood samples and conducting the analysis of

disease mechanisms. The leader of the DIPP project, professor Simell points out that

the project has unique data for childhood diabetes research: I think for that we have,

in the DIPP project, the biggest Finnish actively working biobank for researching

diabetes. We have 700, 000 tissue samples in freezers, waiting for analysis (blood

samples from 1994 to 2008). They are a unique cultural resource, very unique and

rich data to study many other questions in addition to those related to diabetes. If we

have a tissue series from a newborn child to his/her adulthood, it is a very rich unique

thing to study. So we have over 100 cases that had Type 1 Diabetes and then we have

control samples from children who never had the disease.

1.2 Biobank and Changes in Biomedical Research; Questions for Science,

Technology and Society
What is a biobank? Biobanks are the main collections of human material that are used

as a resource for studying technologies of life. One leading biobank theorist,

2
Herbert Gottweis (2008, 36) defines a biobank as follows: they are not(only) scientific

projects and infrastructure developments, they simultaneously constitute a new way of

governing life through highly complex social/scientific assemblages, consisting of a

multiplicity of heterogenous objects.

Nikolas Rose (2007) points out that much biomedical research is based on seeking

premonitory knowledge, which means that research relies on the idea that people

have a genetic susceptibility to a certain disease. New diagnosis equipment and

techniques are important in biomedical research. As Rose continues, human

technologies are an assembly of knowledge, instruments, artifacts, persons, practices

and spaces structured by human rationality. Therefore, biomedical research tools are

technologies of life, which embody futurity. On the other hand, the future-orientation

of biomedical research is linked to questions of how technologies create a culture of

hopes and expectations. Various sorts of hopes and expectations are experienced by

many parties: individuals and their families, scientists, governments and health care

organizations. For biomedical research markets, there are high hopes of biomedical

and biotechnology companies creating new markets for healthcare. Developing a

vaccine for a disease often takes too much time. Therefore companies are also

interested in developing tools for the early monitoring of a disease.

Gottweis and Rose define a biobank as a complex socio-technical assemblage just as

much of the science and technology studies literature in recent years has done. To

study relationships between science, technology and society (STS), it must be

understood that science and society are co-produced. Scientists and citizens take part

in co-producing science and society. It changes the role of citizens in biomedical

3
research and at the same time research creates use- and exchange values for society

and the scientific community.

However, there is not much STS based empirical research of hospital work relating to

maintaining biobank sample collections and how research groups use these biobank

samples in their work. I assume that empirical research of everyday biobank activity

has to be linked to STS research. For example, from an STS point of view it is

important to take up questions and themes such as, those raised by Cambrosio et al.

(2009a, 2009b) and Thevenot (2009). They use concepts of biomedical conventions,

regulatory objectivity and different practical activities of collective biomedical

research to show that there are different kinds of engagements between people and

institutions. For Cambrosio and his research colleagues, the activities involve skills,

tools, methods, styles of practice, together with institutional arrangements to mobilize

new forms of objectivity and regulation. In my opinion, we need more empirical

research about how biobank activities and also new modes of scientific knowledge

(systems biology) engage with classification systems, laws and regulations and how

official actors and institutions try to act in creating these new engagements and why

they do so. Thevenot (2009) calls more broadly for standardization to be connected to

regimes of engagement. He simply means by that a variety of ways in which

humans are committed to their environment.

Gottweis (2008, 22-23) has also pointed out that tissues have been collected for

decades for medical purposes and that it is not a new phenomenon. He also

emphasizes that what has changed and developed is the interest in studying tissues

with instrumentalities, tools and devices of information technology together with the

use of system biological research methods. These different developmental transform-

4
ations make it possible to study the genesis of diseases in more detail. This

transformation has lead to a situation where the repositories of biological samples are

the most important resource for studying diseases.

Klaus Hoeyer (2008) has pointed that biobanks became objects of increased scientific

and economic expectations during the 1990s in some western countries. Hoeyer sees

that three interrelated driving forces, which are related to developments in tissue

sample collection, can be identified in the 1990s: namely developments in (1)

genetics, (2) the politics of patient rights and organizational liability, and (3) the

commercialization of research.

1.3 The Human Genome Project as a Turning Point in Biomedical

Research

Today, as the production of scientific knowledge becomes increasingly integrated

with the global market economy, the epistemic, ethical and legal status of

technomedical innovations and products are becoming contested. Therefore, that

means a change in the social forms and practices of research work, that are occurring

largely through a remaking of the technical, informational and institutional

infrastructures of biomedicine via the incorporation of computer and information

technologies. Perhaps the most famous example of that kind of organizational change

is the Human Genome project of the Celera Diagnostics company, which tried to

machine make a future (Rabinow & Talia-Cohen 2005). It has opened up new

research opportunities for various system biological and genetical research areas.

Human genomics has become Big Science. The importance of databases and new

information technologies should be considered in the broader context of the

5
informational turn in scientific knowledge creation. The Human Genome Project is an

example of the need for large-scale distributed databases in biomedical scientific

research practice. The projects aims were to identify all the genes, the sequences of

DNA and store the information of the projects work in databases. In the early 1990s

the entrepreneurial biomedical scientist Craig Venter worked for The Institute for

Genomic Research (TIGR) a nonprofit genomics research organization and after that,

in 1998, joined Celera Genomics. In June 2000, Venter from Celera Genomics and

Francis Collins from the National Institute of Health and U.S. Public Genome Project

jointly announced the mapping of the human genome, but ever since then there have

been debates about whether all the information is freely available for the international

research community.

After the mapping of the human genome was published, one of the most important

tools of system biological research work identification has been databases. Some of

them are available via the internet. There is also a demand, that the biotech sector

needs to be able to capitalize on the knowledge and transform it to technologies and

products as new treatments, drugs and new methods for biomedical research. In

today`s society the boundaries between the private and public spheres of science have

merged and the two strands are now co-produced.

Following the publication of the complete human genomic sequence, the post-

genomic era has been driven by the need to extract useful information from this

genomic data (Zwart 2009). When the first draft sequence of the human genome was

published in 2001, it was followed by a rapid growth of different approaches to

extract useful information from the genomic sequence. New information technologies,

6
research tools and measurement devices have opened up new opportunities to develop

new drugs and new tools for detecting the early symptoms of diseases. As Zwart

notes, the practices related to bioinformatisation changes and reflects life and society

at large. Those new forms of bioinformatisation allow new identities, new

categorisations and new forms of social organization.

2. What is Diabetes?

In Finland diabetes is one of our major public health problems. It affects the quality of

life of those who develop the disease, causes many complications and increases

mortality. In Finland there are 40,000 people with T1D and about 250,000 people

with Type 2 Diabetes (T2D). About 4,000 children under the age of 16 have diabetes.

Also the number of undiagnosed cases of T2D is estimated at 200,000. The national

burden of diabetes is large with societal and also economic problems in terms of

healthcare costs. There has been a clear rise of T1D cases. For example between 1989

and 1998 there was an overall year-on-year rise of 3,2 % in Europe, equivalent to a

doubling of cases in a 25 years, and the most rapid relative increase was in children

under 5 years.

Diabetes is divided into two main types: T1D and T2D. They used to be called

juvenile diabetes and adult-onset diabetes because of the age at which the disease

typically arises. Besides these two types, there are a small number of other specific

diabetes types, which form their own group for classification (for example; LADA

and MODY types). T1D is caused by the destruction of cells that secrete insulin in the

pancreas (this type also known as IDDM insulin-dependent diabetes mellitus). T2D

is mainly caused by defective insulin action (insulin resistance) and the associated

7
relative shortage of insulin (this type also known as NIDDM non-insulin-dependent

diabetes mellitus) (Laakso & Groop 2007).

2.1 A Controversial Concept of Diabetes

Marx W. Wartofsky (1976) wrote about the historical epistemology of diseases1. For

Wartofsky, diabetes is a good example of how research and health care through a

history of instrument-making and methods has changed the understanding of

diseases:if we take the concept of disease, I think, that what counts as disease

differs radically in conception and treatment approach from one historical or cultural

context to another. Diabetes Mellitus, known to the ancient Egyptians, is presumably

the same disease we know today. What has changed is our understanding of it, and

our treatment. This change, for example, is at a point of radical transition today

(1976), as the simpler insulin-deficiency model yields to a more complex account of

the biochemical balancing and triggering mechanisms.

For Wartofsky (1997, 64), the object of medical practice defines the course of how a

disease concept has historically developed: The medical object is not given; it is

constructed in the course of activity in medicine- the product or artefact of the

relevant history of medicine. The concept of diabetes has not always been used. The

taxonomies of diseases have been constructed through practices: classifications range

between normal and pathological in the medical sciences. Different definitions of

illnesses and diseases range from the clinical and laboratory, from the everyday to the

scientific. The concept of disease is nowadays constructed through very complex

biochemical research procedures, where system biological research methods,

biobanks and databases have a central role.

1
See also excellent research of epistemology of disease concepts (Jensen 1987).

8
The history of diabetes research claims only one major medical discovery, the

discovery of insulin, which was made by four scientists (Frederick G. Banting,

Charles Best, James H. Collip and J.J.R. Macleod) in 1921 at the University of

Toronto. In the experimental period, when T1D was conceptualized in 20th century,

scientific experiments defined the path. The distinction between what is now known

as T1D and T2D was made by Sir Harry Himsworth in 1935. An instrument

revolution (for example the invention of the microscope), made it possible to study

disease in the laboratory and make new scientific discoveries. The discovery that

diabetes has an immunological cause was another important step in the early 1950s.

Insulin measurements confirmed that patients with the first clinical presentation of

diabetes (now known as T1D) produced no insulin at all. Since the late 1970s,

diabetes specialists have understood T1D as an autoimmune condition in which the

body attacks the cells in the pancreas that produce insulin. This view, which was

articulated in the 1970s lead to the discovery of Islet Cell Autoantibody (ICA) in

1974. The same year, the susceptibility to this autoimmune response was tied to the

section of the genome, HLA gene alleles (Harrison et al. 2008). As a scientific term,

Type 1 Diabetes was introduced in 1976 by Andrew Cudworth. As Hedgecoe (2002)

agrees, professor Cudworth in his publications from 1976 to 1978, changed the format

of the terminology from Type 1 Diabetes to Type I Diabetes. Clinical

classification was changed to genetically one in Cudworth`s publication 1978.

Today, in the field of diabetes, there are many contesting concepts concerning how

diabetes should be classified. At the World Congress of Diabetes in 2008, new

concepts such as Double Diabetes and Hybrid Diabetes were introduced, and new

candidate genes and molecular findings were presented.

9
3. The DIPP Project as a Research Object

In Finland there has been a strong research tradition in the study of childhood

diabetes. In the early 1990s the Finnish Academy supported three diabetes research

professors in starting the DIPP project. After that, the project was set up in Turku in

1994, in Oulu 1996 and in Tampere in 1997. Later, other research groups joined the

project. The project has three different developmental phases:

1). Foundation of the DIPP (1994-1998).

The DIPP was founded by three professors, who studied type 1 diabetes using

different hypotheses. Also the Finnish Academy offered strong support in terms of

funding and making collaboration possible. The DIPP project started in three

university hospitals: in Turku 1994, in Oulu 1996 and in Tampere in 1997.

2.) Creating the infrastructure of the DIPP project (funding 1999-2004).

In 1999 the DIPP received remarkable funding from the Juvenile Diabetes Research

Foundation International (JDRF), which is a large diabetes research association in the

United States. With JDRF funding, it allowed the creation and development of an

infrastructure of biobanks and related databases for collective diabetes research.

3.) System biological studies (metabolomics, proteomics) (2005-).

In 2005 a new phase in the DIPP project began. System biologists began to conduct

research on human samples using new methods and tools.

The research groups of the DIPP project are listed in table 1. Picture 1 of the DIPP

research collective shows how three university hospitals and their databases are the

main resource for research group work.

10
Name Year of Joining DIPP collaboration Focus
Turku University 1994 Biobank, database, General office and
Hospital Prof Simell meeting families different studies
related to T1D
Tampere 1997 Biobank, database, Nutrition and milk
University Hospital Prof Knip meeting families studies
Oulu University 1996 Biobank, database, Studies of
Hospital PhD Docent meeting families, ketoacidosis and
Veijola autoantibody children of Oulu
laboratory region
University of 1997 Virus studies of Enterovirus studies
Tampere; Virus Prof Hyty T1D,virus labo- related to T1D
studies ratory
University of 1997 Studies of nutrition Nutrition studies
Tampere; Food and Prof Virtanen related to T1D
milk studies
VTT Espoo, 2005 Non clinical System biology
system biology Prof Oresic research (metabolomics)
studies related to
T1D
University of 2005 Non clinical System biology
Turku, system Prof Lahesmaa research (proteomics) studies
biology related to T1D
University of 1994 Genetical Genetical studies of
Turku, genetical Prof Ilonen susceptibility T1D
studies related to T1D,
genetics laboratory

In addition to this, DIPP members also participate in international research networks

such as TEDDY, TrialNet and DIAPREPP. TEDDY (The Environmental Determi-

nants of Diabetes in the Young) is a new international research project carried out by

a consortium of six clinical centres from four countries (Finland, Sweden, Germany

and the USA). In Finland, the project was launched in 2004 at the university hospitals

of Turku, Tampere and Oulu. In Finland, children who have a higher risk of T1D are

recruited to TEDDY, children who have a medium risk are recruited to the DIPP.

Families can also choose whether they want to participate in DIPP or TEDDY. The

idea of the DIPP research is based on collecting samples and clinical information in

the university hospitals which monitor children at intervals. Nowadays, DIPP has

11
three regional biobanks (Turku, Tampere and Oulu), where samples are stored in

freezers. Also every university hospital has its own database for clinical document-

ation. However, Tampere and Oulu also send research information to the main

database at Turku.

Picture 1: DIPP research network

3.1 Research Questions

My purpose is to investigate how the construction and use of biobank collections and

databases influence T1D research and the work of research groups. The DIPP is a

research community where every research group has its own research agenda. The

whole community shares the goals of uncovering which factors influence the onset

of T1D and creating models of prediction and means of prevention of the disease.

1. How, by whom and by what means are the DIPP biobank and related databases
created and how are they maintained?
12
The first question focuses on how a shared infrastructure of research activity was

created and then maintained. Biobank material and information related to that material

are vital resources for research work and they create opportunities for studying the

disease in different laboratories. I am examining how the DIPP as a biobank project

collects samples and database information and how this activity has changed during

the different phases of the DIPP. So far, there are hardly any detailed sociological

analyses or ethnographies of biobanks as material infrastructure and activities, excerpt

Wendy Marsdens study on biobanks (Marsden 2008). More concrete studies are

needed to understand a biobanks as means of collective activity.

2. How do the DIPP research groups use biobanks and related databases? How do
these uses influence the research agendas of the DIPP groups and the forms of
collaboration between them?

The nature of the second research problem is connected to scientific practices and

local research programme. I will analyse how the research groups use the samples

and how they conduct research cooperatively. My approach to studying research work

is to look at how the biobank collections are the main shared resource between the

research groups. Because of that, in the research work, biobank collections are treated

as a shared material resource, which each group utilizes in their own research

agendas. For example; in the system biological research work the knowledge of

samples is produced of those childrens blood samples, who later got diabetes. This

information from those samples is tried to be translated into technical or medical

innovation, which prevents children to get the diabetes in the future. In sum, the idea

of biomedicine is to translate this knowledge into innovations in the field of health

care; this approach has been called bench to bedside. Linda F. Hogle (2009) agrees

13
that emerging medical technologies are connected to concepts of diseases, and

creating new bioinformatical knowledge is the only way to evolve ways of

knowing. By ways of knowing, Hogle means, developing new scientific discoveries,

new diagnostic tools and the possibility of creating drugs. On the other hand with

system biological research work one might ask; if the concept of Type 1 Diabetes was

expanded, could the scientists make a breakthrough in their research?

Also external networked projects are important when it comes to new tools being

used. Research agenda changes when new projects start. For example, the nature of

system biological research group work (VTT) means that these are different sources

of funding and different kinds of research partners. Because of that, complementary

question is: How do external networks change research agendas and do they also

change the role of diabetes research objects in research work?

3. How are the DIPP biobank and databases governed and how are conflicts of
interest and ethical issues related to biobank use dealt with?

The third research problem focuses on analyzing how rules are created in cooperative

research activity. The DIPP has an executive group, where leaders of the research

group meet. However, Turku, Tampere and Oulu university hospitals have their own

ways of collecting samples and their own repositories and databases. The ethical

committees at each hospital have given permission for the DIPP study. My interest is

how the DIPP databases work and how the utilization of that data is possible given

the division of labour and the rules of the DIPP.

The nature of the third research problem concerns regulation and governance aspects

of DIPP. It seems that a Biobank Act will be passed in 2010 in Finland. However, the

14
creation of a national infrastructure of biobanking and EU cooperation are other

important questions in the scientific research use of biobank material.2 One of the

national governance expertise instruments is Kansalliset Eettiset Neuvottelukunnat

(eng. Advisory Board on Biotechnology in Finland), which published report on

biobanking in December 20083. With this third research question, I want to focus on

how biobank activities are governed locally and also on the role of the executive

group`s work.

4. How does the DIPP project contribute to the treatment of diabetes? How does the
DIPP project contribute to the welfare of the families and their children?

This fourth research problem asks the question how this collective research project is

useful for the families who are participating in the research and for the whole of

Finnish society. With this fourth research question, I want to explore how the

different research groups are contributing to the welfare of the families, . The nurses

in the DIPP have an important role in providing information about diabetes to the

families who are participating in the study. The DIPP community has many kinds of

societal impacts, which are related to the research results, but it is important note that

societal impacts are also related to everyday practices in DIPP university hospital

work, when DIPP staff meet the families which are participating in the study. This

question addresses various ways of research and health care work, and how the

prevention and prediction of diseases are connected to the daily work of meeting

families and children.

2
See the news of the Finnish Academy (4.12.2008) Url: http://www.aka.fi/fi/A/Suomen-
Akatemia/Tama-on-Akatemia/Ajankohtaista/Biopankkilainsaadanto-uudistuu--
tutkimusmahdollisuudet-paranevat/
3
http://www.biotekniikanneuvottelukunta.fi/seminaarit/biopankki-julkaisu.pdf

15
3.2 Research Sites

I have chosen to study two of the DIPP research groups: (1) the children hospital and

autoimmunological laboratory at the University hospital of Oulu and (2) the Systems

biology research group of VTT, QBIX (QBIX).

3.2.1 Site1: Biobank Collection & Maintenance Work (Oulu group)

The Oulu group is one of three clinical groups that collect samples from patients for

the database in collaboration with the Turku and Tampere groups. The Oulu group

works with everyday practices of biobanking: researching, collecting, maintenance

and sending samples and information to other research partners. Families and

newborn children are recruited for the DIPP study. If families are willing to

participate in the study, doctors and nurses meet these families (at first at 3 month

intervals and later at 6 month intervals) and take samples from the children for

laboratory studies. Approximately 3,000 children are participating in T1D diabetes

studies (DIPP and TEDDY) in the Oulu region. The main researchers of the Oulu

group have conducted research related to ketoacidosis in children in northern Finland.

The Oulu staff includes approximately fifteen workers. In the laboratory there are

eight laboratory workers who study four autoantibodies in all the DIPP children, who

are monitored and who have a genetical susceptibility to diabetes. In the same

building, nurses interview families: collecting clinical information and providing them

with health care and diabetes information. Oulu is an example of how biobank

samples are collected and maintained, and also of how clinical information is saved in

16
databases. At the same time it is the DIPP Studys local biobank. In my dissertation, I

analyze their everyday working practices at Oulu University hospital.

Picture 2: Laboratory worker storing biobank material in the DIPPs Oulu laboratory.

3.2.2 Site 2: The Metabolomics Research Group (VTT, QBIX)

Secondly, the system biological research group is an example of how blood samples

are studied without clinical work and demonstrates, what kind of highly complex

competences are needed in system biological research. In the project, samples are

studied with mass spectrometry devices, using computer programs and databases via

the Internet. At the same time project creates its own database of research data.

Metabolomics is defined as the systematic study of the unique chemical fingerprints

17
that specific cellular processes leave behind in the human body. Type 1 Diabetes is

only one research interest of the group. In fact, the group is participating in several

projects; for instance EU projects 6 and 7 and an international gut microbiota research

project. The group gets its funding from diverse sources. Because of their wide

collaboration, they are able to widen their perspective in understanding human

metabolomes and nutrition.

There are two subgroups inside the metabolomics research group. The first subgroup

makes measurements with the mass spectrometry devices (laboratory group) and the

second group works with bioinformatics data (statistics and mathematics). There are

five phases in the research process. The different experts participate in each phase

(Oresic interview 2008). Those work phases are described in picture 3. In the

following list the main means and instrumentalities used in each phase are mentioned:

1. Extraction

The samples are stored in - 80 celsius and usually handled in - 20 celsius. The

laborants preparate samples using accurate protocols, which means that different

methods of extraction are used before samples can be analyzed with the mass

spectrometry devices. The outcome of this phase of work is a sample serum tube.

2-3. Analysis & Processing Data

The laboratory technician makes measurements using a MS spectrometry device. The

sample run takes 18 minutes, and every sample must run four times. The outcome of

this phase is quantitative raw data, which is done by MZmine, an open source

software processing software. After that, data processing identification begins.

4. Statistics
Statistical and mathematical methods are used for analyzing raw data. After the data is

modelled using these methods, it is possible to begin working with classification

18
systems and databases in order to make the data more qualitative in nature. The

outcome of this stage is mathematically and statistically modelled classification data.

This phase of work uses data processing identification tools and knowledge mining

methods.

5. Interpretation

The researchers work together and try to gain some biological insights from the data.

Researchers determine how to conduct data-driven integration, when the intention is

to discover some biological insight. In this phase, they are able to begin to write

scientific articles related their observations. As a result their observations provides

more knowledge of the nature of the symptoms of diabetes in children`s blood.

The system biological research group consist of 20 people and every member has own

his/her specified task. When tissues are examined, information of tissue use and

measurements are collected on the internal databases of the research group. The

system biological identification works most important tools are internet mediated

databases and tools, for example, LipidMaps, T1DBase, Kegg, etc.

Analyzing the work of these two groups has made it possible show how tissues and

information travel through the process from sample taking to creating system

biological information databases in order to search for new scientific knowledge.

Analyzing the way tissues travel from the biobank to the research groups, allows one

to understand tissues as a material property and as biological information. When two

groups are working with the same tissue samples and at the same time they need the

other research group`s input, so this is a form of reciprocal collaboration. In sum, it

enables one to show how the use of databanks transforms clinical work and, on the

19
other hand, makes new ways of research, based on bioinformatics and modelling,

possible.

Metabolomics platform
Systems biology via metabolomics
Experiment design + Analytical chemistry + Chemometrics + Bioinformatics

Metabolite extraction methods Profiling experiments

Samples and analytical platforms (LC/MS, GC/MS)

Global screening (H2O soluble)

Global screening (Lipids)

Primary metabolites
Eicosanoids and fatty acids

Other

Multivariate statistical analyses

Data-driven integration

Bio-/chemo-informatics Data processing

knowledge mining Biological insight Identification

Picture 3: Metabolomics platform for Type 1 Diabetes Research (picture by the

Systems biology research group of VTT, QBIX)

4. Theoretical Approach

I utilize resources from Science and Technological Studies (STS) and Cultural

Historical Activity Theory (CHAT) to make sense of networked diabetes research.

The role of new instruments in biomedical research of diabetes is crucial, where

scientific instruments are carriers for creating material knowledge. Christine Hine

20
(2006, 271) describes databases as scientific instruments; the use of them changes

scientific work practices and the spatial environments in which science is done. I am

interested through the study in shared biobanks and actions related to them in

analyzing the change in work practices. On the other hand, the biomedical research

agenda changes, when strong external networks of research collaboration are

constructed. The change and development of research agenda is crucial, especially

for the development of highly complex biotechnological expertise in systems biology

research work.

4.1. Cultural Historical Activity Theory: Object, Tool and Mediation

Cultural historical activity theory (CHAT) has its roots in the works of Lev Vygotsky

and Alexei Leontjev. Mediation is a key concept in CHAT: that human thought and

action are mediated by cultural means. According to Vygotsky, the main types of

means are tools and signs. The concept of artefact-mediated activity (Vygotsky, 1978)

implies that artefacts play a key role in the creation of new knowledge. For

Vygotsky, the most essential difference between sign and tool is the way they orient

human activity. The tool is externally oriented; it must lead to changes in objects.

When the sign is internally oriented, it aims at mastering itself. The nature of activity

is always collective. An object is always held by a subject, person or group, who is or

are engaged in activity. The motives of the activity are the giving of specific

directions. Leontjev (1981, 46) pointed out that Behind the object, there always

stands a need or a desire, to which the activity always answers . A subject can act on

an object only through artefacts, as a mediator. The mediator objects connect humans

not only with the objects, but also with other people.

21
In the 1980s a second generation activity theory was proposed by Yrj Engestrm

(1987), and lately, in the 2000s his theoretical ideas have been described as third

generation activity theory (Engestrm 1999). The third generation activity theory

intends to develop the conceptual tools, multiple perspectives and networks of activity

systems. New objects, new divisions of labour and new tools are the main points,

when activity is expanding and changing the way of activity. When an old technology

is collided with a new one, it changes the whole activity. Therefore, human

development can be seen as a process of remediation. Engestrm (2006, 1789) has

called the constellation of mediating tools and signs in an activity system an

instrumentality. The instruments covers both that are cognition related the use of

instruments. The activity systems and tools of collaborative activity have become

more complex in the 21st century. Activity is a collective process, and for Engestrm

collective activity is a system. The history of a system has to be analyzed carefully,

and Engestrm has emphasized that the principle of historicity is an important

cornerstone of activity theory. When humans try to transform or change their activity,

it is not possible to understand how these new ways of mediation can change their

activity without historicity. The means of mediation can be very different: models,

instruments and signs. Therefore, the means of mediation need the inputs of various

actors too; without families, children, researchers, nurses, laborants and office

workers, it is not possible to collect and maintain biobanking activity. Miettinens

(2009) collection of articles is excellent account to conceptualize activity theory and

Science Technology Studies in various research work sites.

The role of information technology tools has changed many ways of collaboration.

For example, lately, in biomedical research work mediated by information

technologies, the objects of activity have become highly complex. In my research

22
field, diabetes research in the DIPP project is constructed through a network of many

diverse research activities, and research groups have various kinds of collaborators.

The new research infrastructures, classification and tools, which are available from

internet, are revolutionizing the way research is done and communication between

researchers. One such example is the Lipid Maps Identification tool from an internet

web site.

Recently, Georg Rckriem (2009) in his paper on the internet and the future of

activity theory asked the question tool or medium? He agrees, that the World Wide

Web has changed many human activities in a revolutionary way. In his opinion,

activity theory should nowadays deal with the concept of a medium and not only use

the concept of a tool. There is a huge need to conceptualize somehow differently the

revolutionary transformation related to the Internet and other information

technologies. The ways of mediation which these ICT technologies can offer to

societal development have to be taken into account in activity theory. Therefore,

Rckriem (2009, 88) puts various questions to activity theory. He asks Is the current

activity-oriented concept of mediation, with its notion of tool, symbol and artefact,

still sufficient for an adequate understanding of social and individual importance of

digital technology? Rckriem (2009, 89) offers interesting hypotheses in his article,

by trying to answer theoretically with the help of media theorists. So he argues,

firstly, that the solutions of the problem of mediation, developed by Vygotsky and

Leontjev, are historically determined and secondly the distinction between medium

and means of mediation can be made only if the problem of mediation is seen

historically.

23
Rckriem`s points are important, but I think these questions are also questions for

empirical research and sociological and practice related theories more generally. The

first step is, in my view, is to study empirically the emerging sets of internet mediated

tools and instrumentalities. The question, which is central to the development of

activity theory, is how they change historically and culturally particular research

practices. In my case of diabetes research and networked collaboration,

communication and the ways of doing biomedical research work are changing in a

revolutionary way, how diabetes will be conceptualized and researched in the future.

4.2. From Laboratory Studies to Biomedical Platforms and Regulatory

Objectivity

The classical laboratory ethnographies treat the laboratory as a site of research work

and the construction of scientific facts. In the information age ethnography has to

take new directions.

Scientific instruments and the methods and ways of using research tools are very

often developed many times with large scale scientific cooperation, collaboration

between industry and new kinds of communities mediated by information technology

tools. In their laboratory ethnography, Bruno Latour and Steve Woolgar (1979)

observed inscriptions of scientific research work in the laboratory context; however,

today in the system biological research work inscriptions have become mostly digital.

Inscriptions are now primarily available through computers, and research results as

modes of information are stored in collective databases. Many of the research tools

are available from the Internet. Increasing computerization means that researchers

have more complicated access to the object of their research work. It is mediated

through, for example in the case of system biological research work, machines like

24
mass-spectrometry devices and computer programs, which can produce quantitative

data.

The term research technology means that scientific instruments are developed by a

community, which is connected to both science and industry (Joerges & Shinn 2000).

Research-technology activities link universities, industry, public and private research

and instrument-making firms. New modes of collaboration have new funding

agencies, like EU framework projects which try to create large scale research

collaboration. The world of research technology, bridges these two worlds: the worlds

of technology and academic learning. Often the focus in research practices is the

production and theorization of research devices and methodologies which serves

multiple spheres. For example, creating a method for studying diabetes might create

opportunities for studying other diseases using the same methods and instruments.

Cambrosio and Keating introduced the notion of a biomedical platform (Cambrosio &

Keating, 2003). Their approach is also described as platform sociology. According to

them, biomedicine as a scientific approach means that the mechanisms and reasons

for certain diseases are studied with system biological tools and methods. With the

use of tools such as bioinformatics, statistics and mathematical modelling, diseases

and their processes are modelled and quantified as information, which is then stored

on databases. In their historical analysis and microsociological description, an

immunophenotyping platform draws together a range of activities in biomedical

research from the laboratory to different kinds of research work. In the same research

programme, there can be different platforms for studying particular diseases.

25
As a concept, a biomedical platform in immunophenotyping research includes

specific combinations of techniques, instruments, reagents, skills, constituent entities

(morphologies, markers and genes), spaces of representations, and diagnostic,

prognostic and therapeutic indications. The concept of biomedical platform includes

all the social and material arrangements of immunophenotypical research activity. A

platform (2003, 23) is more than an instrument or device, but is a specific

organization of instruments and individuals that share common routines or activities,

held together by standard reagents. Immunophenotyping has brought together

immunologists, clinicians and morphological pathologists, all of whom have different

perspectives on cancer. In the field of science and technology studies, Cambrosio &

Keating work is an extension of that of Rheinberger and his concept of an

experimental system. However, the concept of a biomedical platform was used in

relation to biomedical research in the 1990s. Today, in 2009, the concept of a

biomedical platform has to develop, because research work is confronting challenges

raised by human genome mapping. That change is called post-genomics. One side

of the change is that classification systems and identification tools of system

biological research have become global, open internet-mediated databases.

The objectivity of scientific knowledge and the modes of knowledge production are

one of the main themes in Cambrosio and Keating`s work. Lately Cambrosio et al.

have introduced the concept of regulatory objectivity.(See their new discussion of the

concept in Cambrosio et al 2009b). In this new article they argued we referred to a

new form of objectivity in biomedicine that generates conventions and norms through

concerted programs of action based on the use of variety for the collective production

of evidence. (2009, 654) In biomedical research activity, standards, classification

systems, conventions and regulation systems are everywhere. Indeed, there are
26
institutions which are creating standards, guidelines and regulations. Therefore, in my

view, it is important to look at different levels of regulative objectivity, because the

uses of samples and clinical documentation are linked with local biobanking

protocols, national biobank law, research groups norms and rules for handling

samples and information, but also global systems of evidence. By systems of

evidence, I mean databases and internet mediated tools and their classification

systems for creating scientific knowledge. Some classification systems are young, for

example lipid classification site LipidMaps.org, was created in 2005. Therefore, this

system tries to create regulative objectivity for the whole system biologists` research

community.

4.3 Scopic Systems as New Kinds of Infrastructures of Information

Technologies

In her book, Karin Knorr Cetina (1999) does no longer focuses on the construction of

knowledge. Rather, she examined the way the machineries of knowledge construction

are constructed. Thus, the concept of a knowledge object (Knorr Cetina 1997;

2001) is at the core of her theoretical construction, in that knowledge plays

constitutive role as a socially binding force. The objects of research work are related

to the creative practices of the experts. During this process they become transformed.

The main characteristics of knowledge objects, identified by Knorr Cetina (2001), are

their openness and their ability to change, in their lack of completeness of being and

their capacity to unfold indefinitely.

In her new work, which is related to information technologies and electronic global

markets and working practices of traders, she introduces the concept of scopic system

(2009, 8) as follows: When combined with a prefix, a scope (derived from the Greek

27
scopein, to see) is an instrument for seeing or observing, as in periscope. In such

markets, a scopic system is an arrangement of hardware, software, and human feeds

that together function like a scope: like a mechanism of observation and projection,

here collecting, augmenting, and transmitting the reality of the markets, their internal

environments and external context.

Pablo Boczkowski (2009) has elaborated Knorr Cetina`s ideas and used the concept

of scopic infrastructures of mediation as a way of understanding journalistic work.

For Bochowski the scopic infrastructures of mediation are related to the use of

multiple tools and new mediated means of IT-based work. For Boczkowski new

forms of mediation are the driving force behind changing one`s own work and

developing one`s skills (2009, 52): the notion of a scopic infrastructure of mediation

shares with multiskilling a concern on the ties between the multiplication of tools and

the expansion of technical skills. But it also diverges from it by emphasizing the

infrastructural dimension, the scopic focus, and the centrality of mediation over face-

to-face interactions.

4.3.1 Global Interactionism and New Mediational Means of Information

Technologies Related Work

In this subchapter, I introduce the ideas behind Knorr Cetinas recent scientific work

and how her ideas could be fruitful for my ongoing work. Knorr Cetina defines (2007)

microglobalization as globalization that is based upon connectivity and the integration

of human interaction structures, which are global, but microsociological in character.

Thus global structures of communicating and acting relynot just on intersubjectivity,

but also on the scopic structures that may contradict new structures (Rossi, 2007).

Pointing to Knorr Cetinas ideas, Rossi agrees that Scopic systems deliver the

28
mediated presence of the remote participants and update interpretations and events,

which enables a floating global microstructure to emerge and fuel its dynamics In

addition Rossi points to the community of Linux developers an example of that kind

of epistemic community, (Rossi 2007, 344)4.

In her article Knorr Cetina (2009), uses the example of a biomedical tool and calls it

a scopic component of human-technology interaction and links that idea to the

fatefulness of things. The idea of the fatefulness of human action or activity

originally dates back to the work of Erving Goffman (Goffman 1967).

Knorr Cetinas gives an example (2009) of how a biomedical tool, in this case an

ultrascan instrument, can be used in childrens hospitals. In this research situation, the

concept of may be present in that the health of the fetus may be normal or there may

be a medical problem in terms of the development of the fetus. Fatefulness in this

situation refers to the future of the childs health. These informatically visual

articulations, made with biomedical tools, provide an opportunity for professional

intervention (Knorr Cetina 2009, 82-83). Knorr Cetina refers to an articulation that

also projects what the infant will be and suffer when born, what may happen before

birth, and what medical measures should possibly be taken. Such visual and

informational articulations lay open the fatefulness of things, rendering the relevant

process available for early adjustment and professional intervention. More strongly

put, synthetic situations acquire fatefulness through the informational enhancement

their scopic components offer.

4
Examples of ethnographic studies of open source developers collective as imaginary publics are Kelty
(2008) and Leminen (2006).

29
In different areas of expertise, for instance in medicine, the scopes intimately

articulate a developing fate. Therefore, Knorr Cetina`s idea of the fatefulness of

things seems to be relevant, when the concept of a scopic system is applied to the use

of a biomedical tool for example. In Knorr Cetina`s words biomedical tools are

instruments for scoping: They make visible, project, and record things that cannot be

seen in the physical situation or can be seen only in an informationally deprived

manner (2009, 82). In my view, for instance, genetic susceptibility and many other

signs which can be analyzed from human blood in system biological studies are

actually examples of the fatefulness of things.

Metaphorically, in the case of the DIPP, the whole idea of research is based on, what

we are able to see in childrens blood using new biomedical tools and methods

including: genetic susceptibility of diabetes, autoantibodies of diabetes as carriers of

disease, metabolomic fingerprints in system biological research and many other

significant pieces of information that can be obtained from the samples. These

articulations of the new knowledge of diabetes make research collaboration stronger.

What is significant here is that those things are the basic building blocks of DIPP

research practice. In my research project, I am interested in seeing this DIPP research

in terms of the building and maintaining of the biobank collection as a collaborative

practice, where the use of a biomedical tool is connected to creating new kinds of

infrastructures (scopic systems) of human activity, interactions between researchers,

and also between citizens, experts in diabetes work and research, and public

institutions. As I mentioned earlier in this paper, the challenge of activity theory,

questioned by Georg Rckriem, is how new ICT infrastructures change human

activity. In my work, I see opportunities to use Knorr Cetinas ideas about a scopic

30
system. New concepts, like the scopic system can be useful when trying to understand

how activity theory should deal with the concept of medium and revolutionary

transformation to internet-mediated human activities and, in my study, with the use of

new kinds of biomedical research tools.

4.4 Ethical Issues and the Governance of Human Tissue Collections

Why, by whom and how do authors use the term biobank? The concept of a biobank

has been defined in the political and sociological literature, as a governance effort

(Gottweis & Petersen 2008). Eder et al (2009, 157) define a biobank, that it can be

seen as an interdisciplinary research platform that collects, stores, processes and

distributes biological materials and the data associated with those materials. As Eder

et al, argue; in short: biobank = biological material + data.

It is not only money but semen, tissues, blood and other biological tissues that can be

exchangeable material objects. Human sperm has been cryopreserved and used in

infertility treatment since 1953. Therefore, a biobank has been defined in policy

language as an institution where biological and clinical information is collected and

can be redistributed, either to serve the original donor or for scientific, health

administration or health policy purposes. Lately, in EU policy, there are two main

ways in which biobanking has been expanded. Firstly, there has been the creation of

national biobank laws and larger infrastructure making Biobanking and Biomolecular

Resources Research Infrastructure (BBMRI) at the EU level. On the other hand,

concepts of networks, hubs and infrastructures have dominated biobank concepts and

efforts to harmonize and standardize biobank activities and regulation at the EU

level. All in all biobanking can be understood as a collective biomedical research

31
activity which provides different expectations and means for future research.The

concept of a biobank is relatively new, it was not extensively used until 2000 (Elger &

Caplan 2006) (Loft & Poulsen, 1996).

The term of biobank has recently been defined by the Organization for Economic

Cooperation and Development (OECD, 2006) as a collection of biological material

and the associated data and information stored in an organized system for a

population or a large subset of a population. The term biobank covers all of the

activities concerning the management of human biological samples and files including

their transfer and access. A major part of the OECD`s strategy on biomedical health

research and technology since 2001has been based on the idea that biological

research centres are an essential of the infrastructure underpinding life sciences and

biotechnology and also essential for Research & Development. Six years later the

OECD`s strategy for biological research (2007) centres was taken a step further and

states that these centres need to be networked as a global network, which is a critical

element of the infrastructure. Also the EU Commission started a project in 2005

called Bio-informatics infrastructure for Europe. (in its report;New Research

Infrastructures (tools for science): The European Strategy Forum on Research

Infrastructure List of Opportunities)

From OECD and EU official documents, major arguments can be read to support

more networked, international models of biobanking activity. These are as follows:

(1) Biobanks are expected to become a key resource for the pharmaceutical industry.

(2) Biobanks can and will be used to support the whole drug discovery and

32
development process. (3) The systems biology approach has a central role in the study

of disease-associated alterations of genes, proteins or metabolites.

Biomedical researchers and national health and research institutes of EU member

states have started to develop guidelines for creating BBMRI which is being

developed across Europe (Yuille et al. 2007). This initiative forum is needed for

creating common research infrastructures of biobanking activity and to harmonize

samples and data across the range of different studies. In order to study many kinds of

diseases with different biomedical analysis methods, genotyping, gene expression

profiling technologies, proteomics and metabolomics platforms are all planned to be

associated with BBMRI. In addition, a key challenge in establishing the BBMRI

initiative is the implementation of common standards and harmonization, which is

complicated because of existing heterogenous legal and ethical frameworks in EU

countries.

Three principal expectations concerning biomedical research activities can be

identified: public policy, translational and epidemiological expectations (Tutton

2007). Firstly, the public policy expectation is that policy makers, governments,

academics and industry work together so that significant benefits flow from

biosciences and biotechnologies for drug development, healthcare and national

economies. Secondly, translational expectations are oriented to facilitating knowledge

transfer and collaboration among scientists and clinicians in order to accelerate the

development of more effective and affordable medical products. Thirdly, according to

epidemiological expectations, biobanks will provide resources for identifying the

complex multifactoral background of complex diseases and their relationship to

various environmental factors. This will lead to improved risk prediction and
33
prevention and the production of clinically useful products, such as diagnostic tools

and targeted treatments. These are all regarded as opportunities for tailoring

personalized treatment. In sum, biobanks are a key resource for finding answers to

these different expectations. But ethical discussions about the use of biobank samples

and information have shown policy makers that there are still many critical issues

before large scale international collaboration is possible (Cambon-Thomsen 2004;

Cambon-Thomsen et al. 2007; Milanovic et al. 2007; Knoppers & Chadwick 2005).

There are questions concerning informed consent, confidentiality, the secondary use

of data and the sharing of data and results. In the national and local research context,

all biomedical research must be approved by Research Ethical Committees. The

development of biomedical research involving humans led to the institution of Ethics

Committees. These kinds of ethical committees were created in 1975 in the Helsinki

Declaration.

In Finland, biobanks have existed since the 1980s and today are an even more

important resource for biomedical research (Kansalliset eettiset neuvottelukunnat

2008). The harmonization and standardization of biobank activities are key issues

awaiting regulation at the EU level (Asslauber & Zatloukal 2008). Members of the

BBMRI consortium have written articles to introduce it in a very positive way, such

as Asslaber et al. 2008, Yuille et al. 2007. Harmonization is a key aspect for, as

Asslaber says in an interview, If we help establish this knowledge and provide

guidance, everyone will benefit,, even if you identified (before) regulatory hurdles.

Our aim is also to harmonise quality standards to ensure materials can be better

combined in research (Beishon 2008).

34
5. Research design, data and methods

My study focuses on the central shared material infrastructure of the DIPP project that

consists of the biobank collections and the databases related to them. I follow the

work of the research groups of the DIPP.

The classic example of the use of ethnographical research methods in science studies

is Laboratory Life by Bruno Latour and Steve Woolgar. Their study was based on

observations which were carried out at Salk Institute laboratories between October

1975 and August 1977. Their focus was to follow closely the daily and intimate

processes of scientific work and laboratory routines, scientific documents making and

the use of tools in laboratory research. Bruno Latour spent much time in the field, to

make notes on scientists at work (Latour & Woolgar 1979, 39-40).

I intend to describe and analyze the construction and uses of a biobank by following

the trajectory of a sample from the initial blood sampling to the distribution of

samples to different research groups and laboratories. Interviews and observations are

the main types of data collection of my study.

I will collect data primarily from two research sites. My data collection will focus on

the following issues:

- Various actions, operations and tasks related to the hospitals` biobank

collections. Every research group has various tasks concerning tissue handling

such as when tissues are travel from one place to another, for example, from

hospital to research group. The role of material artefacts will also be taken into

35
 account including how tools, freezers and measurement devices are used in

the work place, for example, laboratories.

- Protocols and instructions are also very crucial in scientific biomedical work.

In my study this means that I need to collect and analyze documents, forms

and protocols related to hospital and research work.

- Information technologies and different softwares, programs and databases are

instruments for collecting information on databases. Hospital staff uses

different instruments of biobanking, when they save collected information in

databases. There is also another kind of information concerning how samples

and information are distributed between researchers. It is crucial for

distributed research, that large biobank data and sample collections are well

organized between research groups. Actors, artefacts and rules of sample

management can only be understood, when the everyday practices involved

with biobanks and databases are analyzed. For example, how samples are

coded (the colours of and the numbers on tubes and the whole question of the

anonymization of samples), how samples are divided into many tubes, so that

blood sample tubes can be distributed to different laboratories and research

groups and part of the samples can be frozen for later use.

- Informed consent documents signed by families, official documents of DIPP

can be used to clarify how different laws, rules and norms are engaged and

how research groups are connected to research collaboration.

36
 - Analyzing scientific articles, the co-writing process and other modes of

collaboration. How scientific articles are written jointly by numerous authors

is a key source in understanding how research groups actually collaborate.

Ethnographic and interview data concerning the DIPP has been collected since 2007.

My data will comprise the following types:

1. Documentary data.

Documents will be one of the main sources for studying the history of the DIPP

and the collaboration between the various research groups. There are different

types of document. These include scientific articles of DIPP, 118 scientific articles

(from 1994 to 2009). There are also documents related to DIPP including, for

example, newspaper articles, the homepages of the projects and official

documentation related to the DIPP research group and organization.

2. Interviews and observations have been audio-recorded and will be transcribed.

In Oulu, I interviewed DIPP workers (each 20-30 min) and VTT group

members interview (each 30 min 1 hour). In 2010 I will conduct more

interviews inOulu with VTT staff.

Group leaders: 6 interviews (2007-2009)

OULU group members: 12 interviews (2008)
VTT group members: 8 interviews (2008-2009)
Other interviews of DIPP members: 3 interviews (2008)

3. Observations have been made in Oulu`s DIPP laboratory and hospital places

and VTT systems biology laboratories. This observation has been documented in

the form notes by the researcher, audio taping and photographs of instruments

37
 related to research and hospital work. The possibility of video recording research

work will be discussed in 2010 with DIPP group leaders and staff.

Table 2 outlines the nature of the research questions, the data related to the questions

and the unit of analysis for each question:

Research problem Data Unit of analysis

1. How, by whom and by Interviews of group Follow the sample
what means have the leaders, interviews of collection and use
DIPP biobank and related maintenance and hospital
databases been created staff, observations in Oulu
and how are they
maintained?

2. How do DIPP research Observations in Oulu and Local research program:

groups use biobanks and VTT, interviews of Oulu research process of the
related databases? How and VTT group members project leading to scientific
do these uses influence paper
the research agendas of
DIPP groups and in the
forms of collaboration
between them?
3. How are DIPP biobank Interview of group leaders, Controversies related to the
and databases governed documents concerning use of tissues
and how are conflicts of informed consent practices
interest and ethical
issues related to biobank
use dealt with?

4. a) How does this DIPP Interviews of nurses and (1)Forms of prevention and
project contribute to the hospital staff, interviews of health care (2) Information
treatment of diabetes? group leaders and inter- interaction between health
b) How does the DIPP views of families care personnel and families
project contribute to the
welfare of the families
and their children?

38
6. REFERENCES
Asslaber, M. & Zatloukal, K .2007 Biobanks: transnational, European and global networks. Briefings
in Functional Genomics And Proteomics 2007, Vol 6; 3, 193-201.

Beishon, Marc. 2008. How Europe is Taking on the Big Biobank Challenge. Cancer World. May-June
2008: 20-26.

Boczkowski, Pablo J. 2009. Technology, Monitoring and Imitation in Contemporary News Work.
Communication, Culture and Critique 2 (2009), 39-59.

Cambon- Thomsen, Anne. 2007 et al. Trends in Ethical and Legal Frameworks for the Use of Human
Biobanks. European Respiratory Journal: 30 (2): 373-382.

Cambon Thomsen, Anne. 2004 et al. The Social and Ethical Issues of Post-Genomic Human
Biobanks. Nature reviews 5: 866-873.

Cambrosio, Alberto et al. 2009a. Genomic Platforms and Hybrid Formations. Paul Atkinson, Peter
Glasner and Margaret Lock (Eds), Handbook of Genetics and Society: Mapping the New Genomic Era.
London: Routledge, 502-520.

Cambrosio Alberto et al. 2009b. Biomedical Conventions and Regulatory Objectivity Social Studies of
Science, Vol. 39, No. 5, 651-664.

Cambrosio, Albert & Keating, Peter 2003. Biomedical Platforms. Realigning the Normal and the
Pathological in Late-Twentieth-Century Medicine. Cambridge, MA: MIT Press, xiv, 544p

Eder, Johannes et al (2009) Data Management for Federated Biobanks. Database and Expert Systems
Applications, 20th International Conference, DEXA 2009, Linz, Austria, August 31 - September 4,
2009. Proceedings 2009

Elger, Bernice S. & Caplan Arthur L. 2006 Consent and anonymization in research involving biobanks:
Differing terms and norms present serious barriers to an international framework. EMBO reports 7: 7,
661666.
Engestrm, Yrj 1987. Learning by expanding: An activity-theoretical approach to developmental
research. Helsinki: Orienta-Konsultit.

Engestrm, Y. (1999) Innovative learning in work teams: analysing cycles of knowledge creation in
practice, in: Engestrm, Y., Miettinen, R., Punamki, R.-L. (Eds). 1999. Perspectives on activity
theory. New York: Cambridge University Press.
Engestrm, Yrj 2006. From Well-Bounded Ethnographies to Intervening in Mycorrhizae Activities.
Organization Studies, Vol. 27, No. 12, 1783-1793.

Goffman Erving 1967. Where the Action Is in Interaction Ritual. Garden City, NJ: Anchor Books,
pp.149-270.

Gottweis, Herbert 2008. Biobanks in Action: New Strategies in the Governance of Life; in Gottweis
Herbert & Petersen, Alan 2008. Biobanks: governance in comparative perspective London ; New York
: Routledge

Hedgecoe, Adam. 2002. Reinventing Diabetes: Classification, Division and the Geneticization of
Disease. New Genetics and Society 21:1, 7-27.
Hine, Christine 2006. Databases as scientific instruments and their role in the ordering of scientific
work, Social Studies of Science, 36(2), 269-298.

Hoeyer, Klaus 2008. The Ethics of Research Biobanking: A Critical Review of the Literature.
Biotechnology and Genetic Engineering Reviews - Vol. 25, 429-452 (2008)

39
Hogle, Linda F. 2007. Emerging Medical Technologies. pp 841-874 In Amsterdamska, O, M. Lynch
and E. Hackett (eds). Handbook of Science and Technology Studies. Cambridge, MA: MIT Press.

Jensen, Uffe Juul. 1987. Practice and progress: A theory for the modern health care system. Blackwell
Scientific.

Joerges, Bernward & Shinn, Terry 2000. Instrumentation: between science, state, and industry. Boston:
Kluwer Academic Publishers.

Kansalliset eettiset neuvottelukunnat 2008 (eng. Advisory Board on Biotechnology): Biopankit ja me.
2008, Helsinki

Kelty, Christopher 2008. Two Bits: The Cultural Significance of Free Software. Duke University Press,

Knorr Cetina, Karin D. 2009 "The Synthetic Situation: Interactionism for a Global World". In:
Symbolic Interaction 32(1): 61-87.

Knorr Cetina, Karin D. 2007 Culture in global knowledge societies: knowledge cultures and epistemic
cultures. In: Interdisciplinary science review, 32(4): 361-375.

Knorr Cetina, Karin D. 2001 Epistemic Practice in T. Schatzki, K. Knorr Cetina & E. v. Savigny (eds.),
The Practice Turn. London: Routledge

Knorr Cetina, Karin D. 1999 Epistemic culture: how the sciences make the knowledge. Cambridge:
Harvard University Press

Knorr Cetina, Karin D. 1997 "Sociality with Objects. Social Relations in Postsocial Knowledge
Societies", Theory, Culture and Society 14(4): 1-30

Laakso M, Groop L. Yksi, kaksi vai monta diabetesta? Duodecim 2007:123:1427-1429.

Latour, Bruno & Woolgar, Steve 1979. Laboratory Life. The Social Construction of Scientific Facts,
Sage Publications, London.

Leminen, Juha. 2006. Vapaan ohjelmistoprojektin kamppailut rekursiivisen yhteisllisyyden puolesta.

Master Thesis , Department of Social Sciences and Philosophy, Sociology, University of Jyvskyl.
URL: http://thesis.jyu.fi/06/URN_NBN_fi_jyu-2006524.pdf

Leontjev, A. N. 1981. Problems of the development of the mind (M. Kopylova, Trans.). Moscow:
Progress Publishers.

Loft, S & Poulsen HE. 1996. Cancer risk and oxidative DNA damage in man. J Mol Med 74: 297312
Ma, Ronald C. W. & Chan, Juliana C. N. (2009) Incidence of Childhood Type 1 Diabetes: A Worrying
Trend. Nat Rev Endocrinol. 2009;5(10):529-530.

Miettinen, Reijo 2009. Dialogue and Creativity. Activity theory in the study of science, technology and
innovations. Berlin: Lehmanns Media.

Milanovic, Fabien. et al. 2007. Biobanking and Data Sharing: a Plurality of Exchange
Regimes.Genomics, Society and Policy. 3 (1): 17-30.

OECD (2001) Biological Resource Centres: underpinning the future of life Sciences and
Biotechnology. Paris: OECD, 2001.

OECD (2007). Towards A Global Biological Resource Centre Network. Paris: OECD, 2007.
www.oecd.org/document/51/0,3343,en_2649_201185_33791027_1_1_1_1,00.html.

Rabinow Paul, Dan-Cohen Talia. 2005. A Machine to Make a Future: Biotech Chronicles, with Talia
Dan-Cohen, Princeton University Press.

40
Rose, Nikolas. 2007. Genomic Susceptibility as an Emergent Form of Life? Genetic Testing, Identity,
and the Remit of Medicine. In Regula Valrie Burri & Joseph Dumit (eds.), Biomedicine As Culture:
Instrumental Practices, Technoscientific Knowledge, and New Modes of Life. Routledge.

Rossi, Ino 2007. Frontiers of Globalization Research; Theoretical and Methodological Approaches.
Springer-Verlag: New York.

Rckriem, Georg 2009. Digital technology and mediation: A challenge to activity theory. In A.
Sannino, H. Daniels, & K. Gutirrez (Eds.), Learning and expanding with activity theory. Cambridge:
Cambridge University Press.

Simonen P., Korhonen T, Simell T, Keskinen P, Krkkinen M., Knip M, Ilonen J, Simell O. 2006.
Parental reactions to information about increased genetic risk of type 1 diabetes mellitus in infants.
Archives of Pediatrics & Adolescent Medicine, 2006, 160: 1131-1136

Thevenot, Laurent 2009. Postscript to the Special Issue: Governing Life by Standards; A View from
Engagements.Social Studies of Science, Vol. 39, No. 5, 793-813.

Tutton, R. 2007. Banking expectations: reflections on the promises of biobanks. Personalised Medicine
4 (4): 463-469

Vygotsky, L.S. (1978). Mind in Society: The development of higher psychological processes.
Cambridge, MA: Harvard University Press.

Wartofsky, Marx .1997. What can the Epistemologists Learn from the Endocrinologists? Or is the
Philosophy of Medicine Based on a Mistake?: Engelhardt. H. Tristram Jr. (et al.): Philosophy of
Medicine and Bioethics A Twenty-Year Retrospective and Critical Appraisal.

Wartofsky, Marx W. 1976. The Mind`s Eye and The Hand`s Brain: Toward an Historical Epistemology
of Medicine: Engelhardt, H. Tristram Jr. and Daniel Callahan: Science, Ethics and Medicine; The
Hastings Center: 167-194.

Yuille, Martin et al. 2007. Biobanking for Europe. Briefings in Bioinformatics Advance Access,
October 23,2007.

Zwart, Hub 2009. Genomics and identity: the bioinformatisation of human life. Medicine, Health Care
and Philosophy, 12: 125-136.

41
Center for Research on Activity,
Development and Learning CRADLE

Institute of Behavioural Sciences

University of Helsinki
P.O. Box 26 (Teollisuuskatu 23)
Finland

Tel. +358 9 191 44165

Fax +358 9 191 44579

ISBN 978-952-10-5663-5
ISSN-L 1798-3118
ISSN 1798-3118