You are on page 1of 12

Article

Protecting vulnerable
research participants:
A Foucault-inspired analysis
of ethics committees

Nursing Ethics
18(5) 640650
The Author(s) 2011
Reprints and permission:
sagepub.co.uk/journalsPermissions.nav
10.1177/0969733011403807
nej.sagepub.com

Truls I Juritzen
University of Oslo, Norway

Harald Grimen
Oslo University College, Norway

Kristin Heggen
University of Oslo, Norway

Abstract
History has demonstrated the necessity of protecting research participants. Research ethics are based on a
concept of asymmetry of power, viewing the researcher as powerful and potentially dangerous and
establishing ethics committees as external agencies in the field of research. We argue in favour of
expanding this perspective on relationships of power to encompass the ethics committees as one among
several actors that exert power and that act in a relational interplay with researchers and participants.
We employ Michel Foucaults ideas of power as an omnipresent force which is dynamic and unstable, as
well as the notion that knowledge and power are inextricably intertwined. The article discusses how
research ethics committees may affect academic freedom. In addition it is pointed out that research
participants could be harmed not only by unfortunate research practices, but also by being subjected
to the protective efforts of ethics monitoring bodies.
Keywords
academic freedom, ethics committees, Foucault, power, research ethics

Introduction
In recent years, research ethics has attracted attention not only in the public discourse in general, but also in
the research communities in particular. In the research sector, ethics is expanding as an organizational
activity as well as a research topic in its own right. The ethical standards and assessments of the researchers
are not regarded as sufficient to protect individuals against abuse and protect participants from being exposed
to hazards and strains, or to prevent damaging consequences of research for society as a whole. The Second
World War represents a watershed in research ethics, and the post-war period saw the introduction of a
number of arrangements and guidelines aiming to prevent abuse of individuals and promote good scientific
practices.1 Obviously, it is important as well as legitimate to strengthen research ethics and make sure that

Corresponding author: Truls I Juritzen, Department of Health Sciences P.O. Box 1089 Blindern, N-0317 Oslo, Norway
Email: t.i.juritzen@medisin.uio.no

Juritzen et al.

641

research is conducted within the boundaries of the ethically defensible. At the same time, it is necessary and
essential to contribute to insights that shed light upon the possible consequences of practices related to
guiding and monitoring of research ethics, with regard to development of knowledge as well as to concerns
for the rights of participants.

Objective
The objective of this article is to render visible certain aspects of power in the exercise of guiding and
monitoring procedures related to research ethics. We argue in favour of power as being present in the
production of knowledge and the administration of research ethics. Furthermore, we emphasize the necessity
of developing concepts of power that can serve to expand our perspectives, so that the guiding and monitoring bodies (in the following called ethics committees) will appear as one among several actors who exercise
power, and as a participant in a relational interplay with researchers and participants. In our opinion, research
ethics is embedded in a perspective on power that focuses on the researcher as powerful, potentially uncontrolled and dangerous. Against the background of this concept of power asymmetry, the ethics committees
are established as an external organ, viewing the powerful and powerless actors in the research field from the
outside. We want to question this view and consider the ethics committees as one among several players in
the field. While developing this perspective, we will argue strongly in favour of the necessity of keeping two
seemingly divergent perspectives in focus simultaneously. On the one hand, we recognize the ethics committees supervision and control tasks as benevolent and absolutely needed. On the other hand we will argue
that this activity is also a practice of wielding power which cannot be exempted from critical reflection and
discussion. Our contribution in this article emphasizes these more critical perspectives.
The articles description and discussion of the field of research ethics is inspired by Michel Foucaults
provocative analyses of power, in which relationships of power are conceived as dynamic and unstable, and
where knowledge and power are inextricably intertwined. These regimes of power that frame the relationships between the monitoring body, the researcher and the participant are at the centre of our interest.

Background
Our recent history provides numerous examples of how research has inflicted suffering, and in extreme cases,
death on research subjects. The most abhorrent and systematic violations of research ethics and human rights
took place in the concentration camps of Nazi Germany.2 In the years following the Second World War,
these atrocities formed the background for the efforts to establish international conventions and treaties
with the goal of protecting participants in research projects against abuse in the name of science.
The Nuremberg Code and the 1964 Helsinki Declaration represents milestones in the efforts to establish
guidelines for biomedical research on humans.3 The revelation of incidents like the Tuskegee syphilis
experiments, in which poor African-Americans for many years participated in syphilis research without
being treated for their disease, reminds us of the importance of guarding researchers and continuously
focusing on research ethics.4
This frightening experience from history has served to establish a broad consensus of the necessity to
emphasize ethics in all research and scientific endeavours. This emphasis on ethics and its formalization,
which we fully support, has provided a much needed transparency and better control of research activities.
Concurrently with the emergence of research ethics, the number of studies of research ethics has grown in
volume. These studies focus on problematic aspects that often are associated with power. Our critical view is
inspired by Foucault, and represents an alternative to regarding power as a hierarchical relationship of
command and subordination. In the following we will provide a short introduction to our reading and use
of Foucaults notions of power.

642

Nursing Ethics 18(5)

Foucault and power


The French philosopher and historian Michel Foucault was interested in power as an omnipresent and
relational phenomenon and studied the structures of power on the level of society as a whole as well as
on what he referred to as the capillary level of power. He investigated power relationships in asylums,
prisons, hospitals, schools and the military, and he envisioned power as relational as well as structural, and
as dynamic and constantly changing.5,6 In spite of the prevailing interest in knowing who is powerful and the
interconnections between finance and power Foucault claimed that: power in its strategies at once general
and detailed, and its mechanisms, has never been studied. What has been studied even less is the relation
between power and knowledge, the articulation of each on the other (p.51).7
A key feature of Foucaults works resides in the analyses of how various mechanisms and technologies of
power target life in a wide sense, and the individuals and their bodies in particular. Foucault described this as
the emergence of what he referred to as biopower.8 In his analyses he showed how disciplining and normalizing mechanisms fastened their grip on individuals and their bodies as well as on entire populations, and how
this served to render humans obedient and compliant as docile bodies.6
Foucault also explored how forms of government have changed into having the governance of individuals
and populations at its centre of attention. He pointed out that the exercise of power in the form of violence and
coercion has gradually proven to be insufficient and ineffective in the face of the challenges posed by modern
societies. People, described as docile bodies, have to an increasing extent become entangled in an interrelationship in which they in various manners accommodate the exercise of power through exhaustive confessions of their defects and shortcomings. Using the concept of pastoral power, Foucault referred to how the
early Christian churches led the members of their congregations like a shepherd leading his flock.8 This
governance of people rather than territories became a component of what Foucault later referred to as the
art of government or governmentality. Governmentality involves governing by conducting the conduct of
others. This means that individuals are guided to governing themselves, thus making any obvious and
flagrant interventions or rule by force unnecessary.
These perspectives must be seen in the context of Foucaults main field of interest during the last years
before his death in 1984. In this period he was also preoccupied with the study of ethics, which was inspired
by the thinkers of antiquity and their ideas about the importance of individual selfreflection and selfdevelopment:
. . . it seems to me that the analysis of governmentality that is to say, of power as a set of reversible relationships
must refer to an ethics of the subject defined by the relationship of self to self (p.252).9

The human sciences (medicine, psychology, sociology, criminology, etc.) and the institutions that practise
them constitute tools for taking care of, or governing, guiding and shaping, the population into governing
itself (discipline, normalization, governmentality). In this manner, institutions, sciences and knowledge
regimes are established, encircling various aspects of human life, in the form of a power that is not primarily
obstructive, negating and blocking, but productive and thereby suited to bringing the governed into an active
and co-productive interconnection with this power.6,7
Another topic that Foucault addressed through various stages of his writing is the integration between
knowledge and power. His starting point was that drawing a clear distinction between power and knowledge
is inappropriate. Foucault ascertained that: The exercise of power perpetually creates knowledge and,
conversely, knowledge constantly induces effects of power (p.52).7 This means that neither knowledge nor
power can exist independently of the other. Knowledge depends on relationships of power inside and outside
the scientific community in order to become true knowledge. Conversely, power is increasingly exercised
and legitimized in an alliance with science. Accordingly, Foucault argued that we should investigate the
productive interconnection between power and knowledge, and stop conceiving of these phenomena as

Juritzen et al.

643

antagonists. With his linkage of power and knowledge, Foucault opposed one of the basic ideas of modernity:
the belief in science and rationality as independent. In the tradition from Enlightenment, intellect and
knowledge, and especially science, were hailed as the basis for culture, progress and civilization. Only when
thinking was free to develop without any restraints imposed by the machinations of power and its pernicious
effects could true knowledge be established and power be reined in. Foucault was critical of the ideal he
claimed to detect in modern humanism, of drawing a clear distinction between power and knowledge:
Perhaps, too, we should abandon a whole tradition that allows us to imagine that knowledge can exist only where
the power relations are suspended and that knowledge can develop only outside its injunctions, its demands and
its interests. Perhaps we should abandon the belief that power makes mad and that, by the same token, the renunciation of power is one of the conditions of knowledge (p.27).6

This identifies two very divergent positions in the understanding of the relationship between power and
knowledge. On the one hand, we have the notion of science as existing above power and its deleterious
influence and effects, and on the other hand we have a notion of science in a dynamic and unavoidable
coexistence with, and dependence on, the forces of power. The latter perspective is our key to the development of a criticism of power. This latter position constitutes the point of departure for our criticism of power.

Informed consent
One of the results of the ominous historic experience of abuse in the name of science is the enforcement of the principle of voluntary, informed consent as a basis for all research involving humans. Thereby, the
participant is given the authority to assess his or her own participation in the research endeavour, and the
researcher is charged with the obligation to provide truthful and understandable information about the perceived benefits and risks involved in participating. The principle of counterbalancing the asymmetry of power
between the powerful researchers and the less powerful participants is fully recognized. Nevertheless, critics
have pointed out certain problematic aspects of how consent is obtained and how competence to provide consent should be assessed and determined, and the weight that should be given to the written declaration of
consent.10,11
There can be little doubt that considerable efforts have been made to find methods for extending research
to groups that are seen as unable to provide consent. Nevertheless, there is a concern among researchers that
an overly one-sided emphasis on consent will complicate research endeavours that use certain methods or are
undertaken among certain groups of participants.10,11,14,17
This is likely to make research on both powerful and marginalized groups more difficult, if not impossible, to
carry out. Secondly, and perhaps even more commonly, there will be a general effect of discouraging those kinds
of work for which researchers believe it will be difficult to get agreement from ethics committees, including (in
addition to the examples already cited) research employing innovative methods or dealing with difficult topics,
groups or settings (p.219).17

One objection which is being raised claims that this principle depends on the precondition that those who
participate in research projects are competent to provide consent. This excludes large groups, such as
children and those who are unconscious, mentally unstable, mentally disabled or demented, who all in various ways could stand to benefit from having their living conditions elucidated by research, outside of
research.12 The researchers obligation to provide information about the research topic, the nature of the data
produced and the subsequent use of the data appear to constitute a further problematic area. In the case
of quantitative designs, these issues can to a greater extent be clarified prior to the start of a research
project and communicated to the participants. When qualitative research designs are used, involving

644

Nursing Ethics 18(5)

methods such as interviews or various forms of observations, several of these issues will remain undetermined
well into the analysis and reporting stages, and this could give the researcher comprehensive authority to interpret the data in a manner that the participants were not made aware of and possibly may reject.13
Informed consent is based on the ideal of protecting the autonomy of the individual, and to bestow power
and authority on the party which is perceived as the weaker one in the relationship: the participant. In spite of
these ideals, which are easy to subscribe to, some strongly critical objections have been made to this
one-sided emphasis on the voluntary, informed consent.
Boden points out how the administration of ethics rests on the ideology of empowering the weaker party in
a relationship, while the practice of obtaining consent increasingly takes the form of a formalistic ritual that
weakens the researchers control over his or her research.14 In studies of professional ethics it has become
obvious that the bureaucratization of research ethics has encountered increasing criticism.

Bureaucratization and juridification


How can good practices of research ethics be ensured? Among the many and varied solutions promulgated to meet the need for a strengthening of research ethics the various ethics committees assume a
prominent role. Bureaucratization is a development trend that implies a shift from an ethical code
based on trust in the researchers professionalism, self-regulation and discretion to an ethical code
which is more rule-based. This shift has been reinforced by a constantly increasing general distrust
in authorities in the form of experts and professionals.15 In the wake of this bureaucratization a
demand for a code of research ethics follows which has a more principle-based and universal focus
with ideals derived from jurisprudence, in which equal treatment and equality before the law are
given first priority.16 This more rulebound obtainment of consent involves a risk of making the process routinized and mechanical, and remote from the ethically reflected practice which is desirable.
Thus, a risk may occur where focus is moved from acting in an ethical manner to appearing as
an ethical actor in order to obtain the acceptance and approval of the ethics committees. Like Hammersley,17 we could thereby come to apprehend that this kind of focus on ethics could have effects
that are contrary to its intentions, and that researchers become more concerned with what will get
them through the deliberations of the ethics committee, rather than with what constitutes appropriate
ethical practices with regard to the participants.
Boden14 points out how the guiding and monitoring arrangements for research ethics transform the
researchers into what Foucault refers to as docile bodies. The researcher complies, and turns into an active
participant in the exercise of power by being transformed into a compliant subject that exercises
self-regulation and self-control, and disciplines his or her own actions:
The regimes of control described above institute technologies of the self that require researchers to become
docile bodies within the research process, self-regulating and self-disciplining their own actions against particular ideas of what is standard and good (p.743).14

This form of subjugation can be associated with Foucaults description of what he refers to as pastoral
power. The growing requirements imposed by the ethics committees increasingly take on a form and scope
that can be conceived as a requirement for confession and for deference to the requirements:
Similarly, it could be contended that IRBs situate themselves as guardians of both proper research procedures and
the protection of research participants. Almost absolute obedience is expected by IRBs [International Review
Boards] [International Review Boards], and many qualitative researchers are constantly scrutinizing whether
they are following the protocol or not (p.108081).18

Juritzen et al.

645

Other researchers describe how notions of research ethics gradually have been transformed from a legalistic
rationality to far deeper, more varied and comprehensive discourses that mould the researcher as well as the
research.19,20 They outline an invasive technology of government that operates in the prolongation of the
caring and guiding pastoral power and the technologies of self-government that promote the subjects
self-regulation and self-disciplining. These various strands of care, governance and self-governance meet
in Foucaults concept of governmentality:
. . . ethics committees are viewed as one technique in a system of governmentality which directs the behaviour of
researchers and possibilities of research. It is argued that ethics committee review discursively constitutes
researchers and participants in ways that may be antithetical to the conduct of ethical research (p.399).20

The technical monitoring of the researchers ethical conduct could also impinge on the very production of
knowledge and undermine academic freedom. Currently, a lot of the critical studies of research ethics from
the UK, Canada, Australia and the USA have focused on exactly this interweaving of regimes of power and
the production of knowledge. Researchers emphasize the obvious requirement for openness and monitoring
of research. At the same time, they argue in favour of the importance of critically investigating the
unintended effects of the monitoring arrangements, which jeopardize methodological diversity and free,
independent research. In the following we will take a closer look at these issues.

Consequences for academic work


Recent contributions to the studies of research ethics point out how monitoring schemes entail consequences
for several aspects of the research process. Thereby, it is demonstrated how the power to exercise control over
research ethics is interwoven with the power to control the production of knowledge. Haggerty16, Lewis21
and Gunsalus et al.22 are inspired by the military concept of mission creep, referring to how military
operations may transcend and expand their original goal. Their point is that the purpose and focus of the
monitoring of research ethics are being expanded from being concerned with the rights of participants to the
very process of creating knowledge:
Ethics creep involves a dual process whereby the regulatory structure of the ethics bureaucracy is expanding
outward, colonizing new groups, practices, and institutions, while at the same time intensifying the regulation
of practices deemed to fall within its official ambit (p.394).16

One example of this goal displacement is also discussed by Cheek,23 who claims that the ethics committees to
an increasing extent also have become concerned with protecting the interests of the research institutions and
forestalling loss of reputation, legal disputes and claims for compensation. This serves to maintain the competitiveness of the research institutions in the struggle to obtain financial support for future research from
public and private donors.
Furthermore, questions are raised as to whether the administration of research ethics gradually has
assumed forms that could threaten academic freedom. A number of researchers have pointed out that the
ethics committees tend to base their views on concepts of science derived from a positivist, quantitative and
biomedical research tradition.16,18,19,2427 With a basis in this concept of science, certain quite specific
expectations are established with regard to design, methodology and implementation of the project, with
concomitant consequences for how issues pertaining to research ethics can and should be addressed.28
Specifically, this could be expressed in, for example, demands for a detailed description of methodologies
and plans prior to the collection of data, and an injunction on any deviations from these plans. In addition,
requirements tend to include the use of standardized procedures for obtaining consent and prior approval of
questions in interview guides and requirements for detailed regulation of observational studies undertaken

646

Nursing Ethics 18(5)

during the provision of treatment and care.29,10 Such monitoring practices are at odds with the (most often)
open and flexible designs used for qualitative research, where the interconnections between the research
problem, the theoretical perspectives, empirical findings and results develop in dynamic interplay throughout
the entire research process. In other words, qualitative research is compelled in the direction of a logic of
knowledge production that is more suitable for a quantitative, biomedical research tradition.
This gives rise to the risk that what is perceived as science of high quality is also perceived as good
research ethics. Quantitative, evidencebased research emerges as the ideal of good science and is perceived
as superior to other kinds of research conducted with the aid of other methodologies. Research that does not
conform to this standard is thereby automatically perceived as less ethical, since it exposes the participants to
the risks and discomforts of research without being able to promise that evidence-based knowledge will
result. This reinforces a methodological uniformity that entails a curtailment of academic freedom and harms
free research and diversity in the choice of methodologies.27,30,31 Or, to quote Denzin: Hand in glove, ethics
and models of science now flow into one another. IRB panels can simultaneously rule on research that is
ethically sound, and of high quality (p.144).32
These critical contributions to the debate on research ethics serve to clarify our thematization of the partly
indirect intervention by research ethics administrations in various aspects of research as an exercise of power.
Foucault criticizes the well-established ideal of knowledge, according to which the production of knowledge
stands above and outside power relationships. We claim that the administrators of research ethics in a similar
manner appear to position themselves as external to the power that is being wielded in the field of research
ethics. This external position serves to define the ability to recognize the exercise of power in others: the
problematic asymmetry of power between the researcher and the participant. However, we want to argue
in favour of a notion of power that also includes the guardians of ethical research conduct, and thereby
constitutes a more comprehensive and dynamic approach to the analysis of power.

Research ethics as powerful intervention


As we have pointed out above, the principle of voluntary and informed consent is fundamental when
participants are recruited to research projects. We have also outlined how this principle has become exposed
to criticism, and in the following we will expand on how the ethics committees guiding and monitoring
activities paradoxically may appear to harm those they are intended to protect: the participants.
By emphasizing the requirement to consent above other considerations, the ethics committees may determine that no research should be conducted on a specific group of participants, because this group is unable to
decide for themselves whether or not they should participate, or because they are incompetent to provide consent. In this case, the monitoring bodies undertake the same actions that they proscribe with regard to researchers, which is to enter into the arena of the weak and vulnerable and decide what will happen or not. Persons who
are deemed incompetent to provide consent can neither consent to participate in research, nor decline to do so.
Persons who are external to them and to the power relationship between the researcher and the participant will
take that decision. In this manner, the ethics monitoring bodies can be conceived as executing a type of paternalistic power over vulnerable and marginalized groups, a practice which is virtually identical to the exercise
of power that, according to their mandate, they should be protecting these groups against.
Even though this in some respects could be perceived as a relatively plain exercise of paternalistic power,
we claim that wider insights can be gained from assessing this type of intervention in light of Foucaults
perspective on knowledge and power. The ethics monitoring bodies should also be conceived of as
knowledge actors who have the right to determine how the exercise of power in this field should be
understood and thereby determine who is powerful or less powerful. This gives rise to a specific ranking
of potential for harm. The use and abuse of power by researchers are perceived as potentially most harmful.
Therefore, participation in research will be ranked as potentially more harmful than non-participation.

Juritzen et al.

647

Implicitly, status quo (i.e. the situation existing before the intervention by researchers) will be perceived as
less harmful than participating in the research endeavour. This unspoken ranking of hazards disregards any
potential benefit that could be gained from having research elucidate areas and activities in sections of
society that otherwise would be inaccessible to the public view. Accordingly, there is a chance that certain
vulnerable and marginalized groups become exposed to a specific kind of offense, by being excluded from
view and failing to have their lives elucidated.
In addition, there is an implicit notion that power exercised by researchers with regard to vulnerable
groups of participants is perceived as more dangerous than power exercised with regard to the same groups
by those who are charged with the monitoring of research ethics. The ethics monitoring committees are in a
position to define the true identify of those who exercise (dangerous) power.
We will argue that it is of decisive importance to conceive of the relationships outlined here against the
background of a concept of power that goes beyond a simple hierarchy of command, domination and
subordination. We also find grounds to establish the possibility of seeing the relationships among
participants, researchers and monitoring bodies in light of elements from Foucaults concept of pastoral
power. The ethics monitoring committees exercise not only a power targeting the party which is assumed
to be powerful, i.e. the researcher, with the objective of protecting the party which is assumed to be vulnerable, i.e. the participant. In addition, they intervene to control and assess the participants room for decision
making, and in so doing they appear as the good shepherd who will guide the vulnerable participants safely
away from any forms of offense and abuse committed in the name of science. This represents a form of
exercise of power, in the service of benevolence, so to speak, which is less visible than the hazards and
powerful interventions represented by the researchers.
This invalidation of large groups of persons who are deemed incompetent to provide consent entails a
potential for larger transgressions than those a researcher will be able to commit. A researcher can commit
offenses against individuals or even small groups of individuals. However, the exclusion of entire groups of
participants (such as those who are deemed incompetent to provide consent) from research may imply that an
offense has been committed against large groups whose life conditions thereby remain concealed because of
lack of research. In this manner, this involves not only the vulnerable and marginalized who are excluded
from being studied. In addition, this harms large groups of others, as unworthy and/or harmful practices that
could have been revealed by means of research remain undetected and are thereby allowed to continue. The
paradox of this situation is that the most vulnerable and exposed remain protected from research, and thereby
from transparency and public scrutiny.
We claim that if we restrict ourselves to focusing on the ethics committees external view and in this
manner regulate the obviously asymmetric relationship between the researcher and the participant, we render
other essential positions and relationships of power invisible. What is rendered unclear or is not being
thematized is how the administration of ethics can remain an unassailable position that conceals the power
of the ethics committees and elucidates the power of other parties.

The practical application of power in research ethics


In the introduction to this article we have briefly pointed out some of the experience from history that has
contributed to establish the prevailing consensus with regard to the need for a high ethical standard in
research. Furthermore, we have outlined some main points from Michel Foucaults concept of power as a
backdrop to some critical objections to the manner in which guidance and monitoring of research ethics
is administered and practised. We have shown how the monitoring committees that should ensure that
rules and codes of ethics are complied with have also encountered criticism. This criticism has revealed
serious consequences for the research practitioners, for the ideal of academic freedom and for those who
should be protected against offense and abuse by research activities. In this article we have sought to

648

Nursing Ethics 18(5)

highlight an understanding of power that provides concepts to consider and investigate the exercise of power
as not only a negative force conceived in a perspective of domination and subordination. By making use of
Foucaults exploratory analyses of power, centred on the concepts of governmentality, docile bodies and
power-knowledge, we have built on, as well as expanded, the criticism which has been raised against the
prevailing forms of guiding and monitoring with regard to research ethics. We claim that Foucaults notion
of power as omnipresent and as a factor that can never be eliminated serves to remind us that we are always
entangled in relationships of power. This also implies that the monitoring of ethics is a position imbued with
power, which requires notions not only of the exercise of power that this agency should keep tabs on, but also
of the ways in which these agencies exercise their own power. We believe that Foucaults concepts allow us
to review and assess more explicitly the administration of research ethics as a form of exercise of power,
similar to other forms of power wielded in the field of science and research.
Our key point is that the position that the research ethics committees are given or have usurped, which is to
defend the weak and vulnerable party, may appear as administration of an authority to act in favour of a good
cause. Research ethics may appear as a position of knowledge that provides a platform for speaking to and
admonishing the powerful, but in doing so remains distant from (the same) power, and accordingly is
excluded from critical review. This appears to imply that a practice which was intended to monitor researchers and the exercise of power in the research process contains the seeds of an exercise of power which itself is
largely unrestrained.
We have pointed out the potential power wielded by the ethics committees, not only with regard to
researchers and research activities, but also with regard to those the committees should protect the
participants. The emphasis which is put on voluntary and informed consent is based on an intention to protect
participants from an evil unacceptable research practices. At the same time, this excludes large and
vulnerable groups from being studied, which opens the gate for other evils continued concealment of
unacceptable healthcare practices or exclusion from participation in the progress and development that
research could have provided. The intervention of the monitoring agencies could thereby produce unintended
effects, by having potentially negative consequences for those that the ethical codes of research have been
meant to protect: vulnerable and exposed participants.

Conclusion
By way of conclusion, we reiterate that our concern is not to oppose the need for guiding and monitoring of
practical research ethics, and neither do we wish to exempt researchers from external monitoring; we have,
however, wished to investigate what apparently constitutes a straightforward protection of vulnerable and
marginalized groups. We are concerned with how a practice which is intended to monitor the exercise of
power (by researchers and the research establishment) is itself turned into an exercise of power which is not
unquestionably and to the same extent made subject to the same kind of critical review.
In our opinion, establishing a research ethics committee at a higher level does not constitute a solution to
this problem. This is likely to accelerate the spiral of guiding and monitoring, and give rise to the perennial
question of who will guard the guardians. Our contribution in this article has consisted in identifying some
issues in light of prevailing monitoring practices and the criticism that has been raised against them. Using
Foucaults concepts of power as a backdrop, this implies that we need to accept a complex and inescapably
unclear relationship to the issue of power, combined with the certainty that power is omnipresent and that
criticism of power cannot be voiced from anywhere outside of power itself. The challenge, for researchers
as well for those who monitor research ethics, will always consist of conceiving the presence of power and its
effects on how, whose and what kind of knowledge should be rendered valid, in the conduct of research as
well as in ethics monitoring practices. In this challenging process we believe that Foucaults perspectives on
power, expressed through the concept of governmentality, the description of docile bodies and the mutual

Juritzen et al.

649

dependence between power and knowledge provide intellectual tools that will allow us to grasp other aspects
of power in the form in which it emerges in the field of research ethics. This allows for a more exploratory and
complex understanding of power as a factor that cannot be avoided, circumvented or neutralized. Instead,
power must be assessed and exposed to scrutiny and analysis in each specific and concrete case, irrespective
of whether it involves the researchers encounter with his or her participants, or whether it concerns
administrative guiding and monitoring of the ethical standards of this researcher.
Acknowledgement
This project has been financially supported by the Norwegian ExtraFoundation for Health and Rehabilitation
through EXTRA funds.
Conflict of interest statement
The authors declare that there is no conflict of interest.
Note
Sadly, Harald Grimen passed away before the publication of this article. His exceptional analytical skills,
logical reasoning, and generous sharing of thoughts will be deeply missed.
References
1. Lynn MR and Nelson DK. Common (mis)perceptions about IRB review of human subjects research. Nurs Sci Q
2005; 18: 26470.
2. Schuklenk U and Ashcroft R. International research ethics. Bioethics 2000; 14: 15872.
3. Shuster E. Fifty years later: the significance of the Nuremberg Code. N Engl J Med 1997; 337: 143640.
4. Pressel DM. Nuremberg and Tuskegee: lessons for contemporary American medicine. J Natl Med Assoc 2003; 95:
121625.
5. Foucault M. Madness and civilization: a history of insanity in the age of reason. New York: Vintage Books,
Random House, Inc., 1988.
6. Foucault M. Dicipline and punish: the birth of the prison. New York: Vintage Books, Random House, Inc., 1995.
7. Foucault M. Power/knowledge: selected interviews & other writings 19721977. New York: Pantheon Books,
1980.
8. Foucault M. The history of sexuality: an introduction. Vol. 1. New York: Vintage Books, Random House, Inc.,
1990.
9. Gros F (ed.). Michel Foucault: the hermeneutics of the subject lectures at the College de France 198182. London:
Palgrave Macmillan, 2005.
10. Hem MH, Heggen K and Ruyter KW. Questionable requirement for consent in observational research in
psychiatry. Nurs Ethics 2007; 14: 4153.
11. Corrigan O. Empty ethics: the problem with informed consent. Sociology of Health & Illness 2003; 25: 76892.
12. Dewing J. Participatory research: a method for process consent with persons who have dementia. Dementia 2007;
6: 1125.
13. Murphy E and Dingwall R. Informed consent, anticipatory regulation and ethnographic practice. Social Science &
Medicine 2007; 65: 222334.
14. Boden R, Epstein D and Latimer J. Accounting for ethos or programmes for conduct? The brave new world of
research ethics committees. Sociol Rev 2009; 57: 72749.
15. Boulton M and Parker M. Informed consent in a changing environment. Social Science & Medicine 2007; 65:
218798.

650

Nursing Ethics 18(5)

16. Haggerty KD. Ethics creep: governing social science research in the name of ethics. Qualitative Sociology 2004;
27: 391414.
17. Hammersley M. Against the ethicists: on the evils of ethical regulation. International Journal of Social Research
Methodology 2009; 12: 21125.
18. Koro-Ljungberg M, Gemignani M, Brodeur CW and Kmiec C. The technologies of normalization and self: thinking
about IRBs and extrinsic research ethics with Foucault. Qualitative Inquiry 2007; 13: 107594.
19. Halse C and Honey A. Rethinking ethics review as institutional discourse. Qualitative Inquiry 2007; 13: 33652.
20. Allen L. Caught in the act: ethics committee review and researching the sexual culture of schools. Qualitative
Research 2009; 9: 395410.
21. Lewis M. New strategies of control: academic freedom and research ethics boards. Qualitative Inquiry 2008; 14:
68499.
22. Gunsalus CK, Bruner EM, Burbules NC, et al. The Illinois White Paper Improving the system for protecting
human subjects: counteracting IRB mission creep. Qualitative Inquiry 2007; 13: 61749.
23. Cheek J. The practice and politics of funded qualitative research. In: Denzin N and Lincoln Y (eds). The SAGE
handbook of qualitative research.Thousand Oaks, CA: SAGE, 2005, p.387409.
24. Boser S. Power, ethics, and the IRB: dissonance over human participant review of participatory research.
Qualitative Inquiry 2007; 13: 106074.
25. Lincoln YS and Cannella GS. Dangerous discourses: methodological conservatism and governmental regimes of
truth. Qualitative Inquiry 2004; 10: 514.
26. Shaw SE, Petchey RP, Chapman J and Abbott S. A double-edged sword? Health research and research governance
in UK primary care. Social Science & Medicine 2009; 68: 9128.
27. Tilley S and Gormley L. Canadian University ethics review: cultural complications translating principles into
practice. Qualitative Inquiry 2007; 13: 36887.
28. Tierney WG and Blumberg Corwin Z. The tensions between academic freedom and institutional review boards.
Qualitative Inquiry 2007; 13: 38898.
29. Lincoln YS and Tierney WG. Qualitative research and institutional review boards. Qualitative Inquiry 2004; 10:
21934.
30. Penn R and Soothill K. Ethical issues in social inquiry: the enemy within? Qualitative Researcher 2007; 6: 47.
31. Holland K. The epistemological bias of ethics review: constraining mental health research. Qualitative Inquiry
2007; 13: 895913.
32. Denzin NK. The elephant in the living room: or extending the conversation about the politics of evidence.
Qualitative Research 2009; 9: 13960.

Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.

You might also like