Hedgecoe Critical Bioethics

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Bioethics ISSN 0269-9702 (print); 1467-8519 (online)

Volume 18 Number 2 2004

CRITICAL BIOETHICS: BEYOND THE


SOCIAL SCIENCE CRITIQUE OF
APPLIED ETHICS
ADAM M. HEDGECOE

ABSTRACT
This article attempts to show a way in which social science research can
contribute in a meaningful and equitable way to philosophical bioethics.
It builds on the social science critique of bioethics present in the work of
authors such as Renée Fox, Barry Hoffmaster and Charles Bosk, propos-
ing the characteristics of a critical bioethics that would take social science
seriously.
The social science critique claims that traditional philosophical
bioethics gives a dominant role to idealised, rational thought, and tends
to exclude social and cultural factors, relegating them to the status of irrel-
evancies. Another problem is the way in which bioethics assumes social
reality divides down the same lines/categories as philosophical theories.
Critical bioethics requires bioethicists to root their enquires in empirical
research, to challenge theories using evidence, to be reflexive and to be
sceptical about the claims of other bioethicists, scientists and clinicians. The
aim is to produce a rigorous normative analysis of lived moral experience.

I. INTRODUCTION1
This article attempts to bridge the gap between traditional, philo-
sophical bioethics, and the social sciences. The central thesis is
that while bioethicists might pay lip-service to empirical social
science’s role in assessing the ethics of new technologies, they still

1
Thanks to the members of the Genomics, Anthropology & Technology
seminar group (UCL), Mike Parker, Richard Ashcroft and two anonymous
referees for comments on this paper.

© Blackwell Publishing Ltd. 2004, 9600 Garsington Road, Oxford OX4 2DQ, UK
and 350 Main Street, Malden, MA 02148, USA.
CRITICAL BIOETHICS 121

have some way to go to fully accept the implications of the social


sciences. Consequently, there is a significant difference between
ethics as presented in bioethics, and the way in which ethical rea-
soning takes place in the clinic, as shown by an increasing number
of sociological and anthropological studies. This gap isolates
bioethics from practice, undermines the validity of its claims,
and reduces its contribution to policy debates surrounding bioe-
thics topics. Building on the so-called ‘social science critique’ of
bioethics, this article suggests ways in which empirical social
science can be used in bioethics.
Often, the response from bioethicists to criticism from the
social sciences is either indifference or over-defensive irritation.2
I hope that this article will generate more constructive reactions.
It seems to me that bioethicists are not ‘anti-’ the social sciences,
but that sometimes the way in which the social science critique of
bioethics has been presented has been overly antagonistic, and
the benefits of engaging seriously with the social sciences have not
always been clear.
This paper remedies these problems by proposing a moderate
version of the social science critique, outlining the features of the
kind of bioethics that might take social science seriously, and the
gains that can be had through adopting such changes. This paper
does not discuss or propose a sociology of bioethics, i.e. an analy-
sis of the social construction of bioethical problems, and the role
of social structures in shaping the way in which bioethics has
developed over the past thirty years.3 Rather, it focuses on the

2
E.g. M.A.M. de Wachter. Sociology and Bioethics in the USA. Hastings
Center Report 1998; 28: 40–42. See also Renée Fox’s account of bioethicists’ reac-
tions to her criticisms in: R.C. Fox. More than Bioethics. Hastings Center Report
1996; 26: 5–7.
3
See: R.C. Fox & J.P. Swazey. Medical Morality is not Bioethics – Medical
Ethics in China and the United States. Perspective in Biology and Medicine 1984;
27: 336–360; P.R. Wolpe. 1998. The Triumph of Autonomy in American
Bioethics: A Sociological View; and J. Guilleman. 1998. Bioethics and the
Coming of the Corporation to Medicine. In Bioethics and Society: Constructing the
Ethical Enterprise. R. DeVries & J. Subedi, eds. Upper Saddle River, NJ. Prentice
Hall; C.L. Bosk. Professional Ethicist Available: Logical, Secular, Friendly.
Daedelus 1999; 128: 47–68; J.H. Evans. A Sociological Account of the Growth of
Principalism. Hastings Center Report 2000; 30: 31–38; M.L. Stevens. 2000. Bioethics
in America: Origins and Cultural Politics. Baltimore and London. The Johns
Hopkins Press; P.R. Wolpe. From the Bedside to Boardroom: Sociological Shifts
and Bioethics. HEC Forum 2000; 12: 191–201; C.M. Messikomer, R.C. Fox & J.P.
Swazey. The Presence and Influence of Religion in American Bioethics. Perspec-
tive in Biology and Medicine 2001; 44: 485–508; J.H. Evans. 2002. Playing God?:
Human Genetic Engineering and the Rationalisation of Public Bioethical Debate.
Chicago. University of Chicago Press. More conventional histories can be found

© Blackwell Publishing Ltd. 2004


122 ADAM M. HEDGECOE

relationship between the social sciences (specifically sociology


and anthropology) and bioethics.4 As such, this paper can be seen
as a complementary piece to Erica Haimes’ recent work, which
addresses issues of value from a broader sociological perspective.5

Definitions
This paper uses the term ‘bioethics’ to cover a range of areas
which might be described by others as ‘medical ethics’, ‘clinical
ethics’, ‘research ethics’, and ‘biomedical ethics.’ While there
might be arguments about the overlap of topics covered in these
terms, they all conform to Daniel Callahan’s definition: ‘the appli-
cation of ethical theory to the dilemmas raised by the practice of
modern medicine, especially those problems raised by the appli-
cations of new technologies.’6 Many of the authors I cite in this
paper focus their criticism on the very American ‘four principles’
approach to bioethics espoused by the Belmont Report and
Beauchamp and Childress,7 which has itself undergone a great
deal of criticism from within philosophical bioethics.8 But the
social science critique also applies to other, meta-theoretical
approaches to bioethics such as Utilitarianism or Kantianism.
From this perspective, the problems of bioethics are related to its

in: A.R. Jonsen. The Birth of Bioethics. Hastings Center Report 1993; 23: S1–S4;
D.J. Rothman. 1991. Strangers at the Bedside: A History of How Law and Bioethics
Transformed Medical Decision Making. New York. Basic Books.
4
Of course the social sciences are far broader than just these disciplines:
one could easily include ideas from political science, economics or even history.
The fact that my examples are drawn from such a limited range of disciplines is
a comment on my own expertise rather than the limits of the social sciences.
5
E. Haimes. What can the Social Sciences Contribute to the Study of Ethics?
Theoretical, Empirical and Substantive Considerations. Bioethics 2002; 16:
89–113.
6
Cited in Bosk, op. cit. note 3, p. 56. I don’t think this view is idiosyncratic:
‘With few exceptions, writers in the field who have reflected on this issue con-
sistently affirm that both medical ethics and the somewhat broader field of
“bioethics” . . . involve the self-critical application of modes of moral reasoning,
in the form of ethical theory or fundamental moral principles, to the new range
of questions raised by the biomedical sciences’: R.M. Green. Method in
Bioethics: A Troubled Assessment. Journal of Medicine and Philosophy 1990; 15:
179–197, p. 180. See also Evans, op. cit. note 3, pp. 193–195.
7 National Commission for the Protection of Human Subjects of Biomedical

and Behavioral Research. 1979 Belmont Report. Washington, DC. US Government


Printing Office. T.L. Beauchamp & J.F. Childress. 2001. Principles of Biomedical
Ethics. Fifth edition. Oxford. Oxford University Press.
8
E.g. K.D. Clouser & B. Gert. A Critique of Principalism. Journal of Medicine
and Philosophy 1990; 15: 219–236.

© Blackwell Publishing Ltd. 2004


CRITICAL BIOETHICS 123

grounding in applied philosophy and moral theory, not the


details of which particular theory has been chosen.
One objection to this definition of bioethics is that it ignores
the alternative philosophical approaches that have grown up over
the past ten years, partly as a response to principalism: casuistry,
narrative ethics, and pragmatics for example.9 Yet these are all
still minority views. As the sociologist and seasoned bioethics-
watcher Renée Fox notes, despite attempts to ‘break through the
domination of the field by the abstract “principalism” of analytic
philosophy’, and to ‘incorporate other philosophical systems into
the matrix of bioethical thought . . . relatively little change has
occurred in the contours, context, style of thought, or the ideol-
ogy of bioethics.’10 The very fact that these approaches have
appeared as challengers confirms principalism as the dominant
way of doing bioethics, in the US at least.11 Consequently,
although the ‘applied ethics’ model (as represented by princi-
palism) may not represent all opinion in bioethics, it is the main-
stream approach, both in academia, the clinic, and in media
representations of bioethics.12

Outline of paper
Section 2 presents a version of the social science critique of philo-
sophical bioethics, constructed from the writings of a number of
sociologists and anthropologists while Section 3 outlines possible
responses to the critique from a bioethics position, and discusses
their limitations. This is followed by the presentation of what I
call ‘critical bioethics’, an alternative to the social science critique,
that incorporates social science research into philosophical think-
ing. Finally, the conclusion speculates about the benefits to be
gained from adopting this approach.

9 Casuistry: A.R. Jonsen & S. Toulmin. 1988. The Abuse of Casuistry: A History
of Moral Reasoning. Berkeley and London. University of California Press. Narra-
tive: H.L. Nelson, ed. 1997. Stories and their Limits: Narrative Approaches to Bioethics.
New York and London. Routledge. Pragmatics: G. McGee. 1997. The Perfect Baby:
A Pragmatic Approach to Genetics. Lanham, MD. Rowman & Littlefield Publishers.
10 R.C. Fox. Is Medical Education Asking too much of Bioethics? Daedelus

1999; 128: 1–25, p. 11.


11 C. Bosk. 2000. The Sociological Imagination and Bioethics. In Handbook

of Medical Sociology. C.E. Bird, P. Conrad & A.M. Fremont, eds. New Jersey.
Prentice Hall.
12 Evans, op. cit. note 3; Evans suggests that the dominance of principalism

in American bioethics debates is a result of ethics committees’ need for a formal


‘ethical calculus’ which would allow quick, easily justified decisions.

© Blackwell Publishing Ltd. 2004


124 ADAM M. HEDGECOE

II. THE SOCIAL SCIENCE CRITIQUE


The nature of bioethics
The critique starts by defining bioethics as ‘a highly rational,
formal, largely deductive mode of argumentation’13 which
revolves around the ‘view that moral norms are binding or pre-
scriptive solely in virtue of their rational justification.’14 While this
description might seem alien and unfamiliar when stated so
baldly, a review of the literature covering mainstream approaches
such as preference utilitarianism,15 rights-theory,16 and principal-
ism17 suggests that it is fair. Applied ethics justifies its theories in
terms of their rationality (rather than emotive strength, say), and
from this they gain their binding force. These characteristics stem
from bioethics’ origin in moral philosophy,18 and the view that
good moral practice in medicine can be achieved by the applica-
tion of pre-prepared ethical theories to specific situations – hence
the ‘applied ethics’ model.
At this point, it is enough to note the singular nature of this
relationship between theory, practice and the solution of prob-
lems. As Charles Bosk notes:
there are not many areas where we equate theoretical and prac-
tical wisdom . . . the idea that moral theory can be used to solve
practical problems cuts against so many beliefs prevalent in the
medical, academic, or larger political culture that we might
wonder about its centrality to the bioethics enterprise.19
It is not clear why such a crucial foundation of the applied ethics
model as the theory/practice divide is so under-examined, but as
a result: ‘Philosophical morality concentrates on developing and

13
Fox, op. cit. note 10, p. 8. Bosk, op. cit. note 11, p. 401.
14
B. Hoffmaster. The Forms and Limits of Medical Ethics. Social Science and
Medicine 1994; 39: 1155–1164, p. 1155.
15
P. Singer. 1993. Practical Ethics. Second edition. Cambridge. Cambridge
University Press.
16
A. Gewirth. 1978. Reason and Morality. Chicago. University of Chicago
Press.
17
Beauchamp & Childress, op. cit. note 7.
18
One obvious objection to the critique is that bioethics has always involved
more than just philosophers. While it is certainly true that a number of differ-
ent disciplines contribute to bioethics, they do so within a framework laid down
by moral philosophy: ‘this system of thought was brought to bioethics . . . by its
founding generation of philosophers, and reinforced by the scientific positivism
of biologists and physicians, and the analytical jurisprudence of the lawyers who
accompanied them’ (Fox, op. cit. note 10, p. 9).
19
Bosk, op. cit. note 3, p. 55.

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CRITICAL BIOETHICS 125

justifying theories and pays little attention to the practical uti-


lization of those theories.’20 Hoffmaster goes on to suggest that
this leads to one of two assumptions. Either moral theories can
be applied to situations with little effort, or that what problems
there are in the application of theories are not worth bothering
with or are at least beyond philosophical consideration. As I
suggest later, it is in the application of ethical theory that the true
test of bioethics comes; yet application is the area where bioethics
is least vocal.
Other results of bioethics’ philosophical origins are: ‘that the
individual is the proper measure of all things ethical, that tools
for measurement transcend culture, and that there is a single,
correct solution for each ethical problem, which is largely inde-
pendent of person, place, or time.’21 Bioethics is constructed in
such a way as to ignore the role of social and cultural factors,
partly because since it champions an ‘ideal of universal ethical
principles’, such variations are regarded as ‘epiphenomena’ and
unimportant. But beyond this, bioethics is wary about the ‘invo-
cation’ of social and cultural factors since they are seen to lead
towards ‘local meanings’ and thence to moral relativism and
potential disaster.22
A strong version of this argument can be found in Ruth
Macklin’s work,23 but there are elements of it in the position of
those ostensibly receptive bioethicists who ask: ‘How do we incor-
porate what we have learned [from the social sciences] into the
making of good moral judgements? How do we get from the “is”
of “lived experience” to the “ought” of those judgements that
require us to act in some justifiable manner?’24
This position seems unwilling to accept that social explanations
go deeper than simply providing interesting data for bioethicists

20
Hoffmaster, op. cit. note 14, p. 1156.
21
Bosk, op. cit. note 3, p. 62. Of course there are a number of objections to
this claim, the most obvious being that there are approaches to bioethics within
the ‘applied ethics’ model (such as Communitarianism) which reject individu-
alistic decision-making. In addition, there are also those bioethicists outside of
mainstream views who also dispute this role for the individual. As I have already
suggested, I do not necessarily agree with all elements of the SSC, but merely
want to present the range of positions that characterise this critique.
22
Fox, op. cit. note 10, p. 9.
23
R. Macklin. 1999. Against Relativism: Cultural Diversity and the Search for
Ethical Universals in Medicine. New York & Oxford. Oxford University Press.
24
D. Callahan. The Social Sciences and the Task of Bioethics. Daedelus 1999;
128: 275–294, p. 288. See also: H. ten Have. 2001. Theoretical Models and
Approaches to Ethics. In Bioethics in a European Perspective. H. ten Have H. &
B. Gordijn, eds. Dordrecht. Kluwer Academic Publisher: 51–82.

© Blackwell Publishing Ltd. 2004


126 ADAM M. HEDGECOE

to examine. The idea of a distinction between ‘is’ and ‘ought’ is


assumed, while social science research suggests that at the very
least such an idea needs more support (see below). The same
author, Daniel Callahan, claims that: ‘ethics cannot be ethics at
all unless it offers some guidance in knowing how to identify an
ethical problem’;25 failing to see that what counts as an ethical
problem in the first place, prior to the application of ethical theory,
is socially constructed. DeVries and Conrad point out that US
bioethics has traditionally been silent on the topic of the ethics
of healthcare funding and structure, while for many from a
European perspective, inequitable access to healthcare, two tier
systems, and the lack of decent health provision for over 40
million people is most definitely a topic of moral interest.26 This
difference suggests that ‘what counts as a bioethics problem’ is
the result, at least in part, of social processes.
Because of this refusal to come to terms with empirical research
in the way in which ethical decision making actually takes place
in the clinic,27 bioethics faces a difficult gap that must be bridged
if it is to remain a relevant and serious discipline. How does it
‘reconcile the clearly immense differences in the social and per-
sonal realities of moral life with the need to apply a universal stan-
dard to those fragments of experience that can foster not only
comparison and evaluation but also action’?28
This cuts deeper than simply suggesting that bioethics is empir-
ically uninformed. A core theme is that: ‘substantive moral work
occurs in determining how a principle might impinge upon a par-
ticular problem, but the resources for addressing that issue are
external to the principles themselves.’29 The simple act of decid-
ing how to apply a particular theory relies on ideas and concepts
external to that theory, and thus beyond its consideration. Clearly

25 Callahan, op. cit. note 24, p. 289.


26 R. DeVries & P. Conrad. 1998. Why Bioethics needs Sociology. In Bioethics
and Society: Constructing the Ethical Enterprise. R. DeVries & J. Subedi, eds. New
Jersey. Prentice Hall: 233–257.
27 E.g. R. Zussman. 1992. Intensive Care: Medical Ethics and the Medical Profes-

sion. Chicago. University of Chicago Press; R.R. Anspach. 1993. Deciding Who
Lives: Fateful Choices in the Intensive-Care Nursery. Berkeley and London. Univer-
sity of California Press; R.C. Bosk. 1992. All Gods Mistakes: Genetic Counseling in
a Pediatric Hospital. Chicago. University of Chicago Press; P. Alderson. 1990.
Choosing for Children: Parent’s Consent to Surgery. Oxford. Oxford University Press.
28 A. Kleinman. Moral Experience and Ethical Reflection: Can Ethnography

Reconcile Them? A Quandary for ‘The New Bioethics’. Daedelus 1999; 128:
69–97, p. 70.
29 B. Hoffmaster. Can Ethnography Save the Life of Medical Ethics? Social

Science and Medicine 1992; 35: 1421–1431, p. 1422.

© Blackwell Publishing Ltd. 2004


CRITICAL BIOETHICS 127

this relates to the earlier point about the gap between theory
and practice; applied ethics relies on the assumption that the
categories in a moral problem (e.g. ‘patient’, ‘informed’, ‘non-
directive’, ‘decent quality of life’) mirror those in the ethical
theory being applied. An ethical decision can then be made. But
this assumes that moral decisions do not take place prior to the
application of theory. As Hoffmaster points out, ‘Considerable
moral work gets done in deciding how a situation is to be char-
acterized, and that moral work can determine how issues are
resolved.’30 For example Oonagh Corrigan’s work on the nature
of informed consent in clinical drugs trials shows how the deci-
sion to focus on patient autonomy and informed consent (as they
are currently conceived) ignores factors which are vitally impor-
tant to patients, simply because they are external to the concept
of autonomy. As Corrigan notes: ‘the conventional understand-
ing of consent fails to recognise the social embededness of such
a process . . . however noble the goal of patient autonomy, this is
sometimes experienced by patients as abandonment. Informed
consent is premised on an equitable doctor/patient relationship
that . . . cannot always be realised.’31
Deciding whether children of a particular age are competent
to give informed consent is a categorisation that can only be made
on the basis of empirical evidence. Yet it has serious implications
for ethical medical treatment, and thus such empirical research
is basic ‘moral work.’ The apparently straightforward classifica-
tion of ‘people as individuals’ – a product of social and political
forces centuries old – has a serious effect on the kinds of ethical
questions that can be asked. Such a classification is part of the
hidden moral work that predates the application of bioethical
theories.32
Even an apparently simple disease category like ‘cystic fibrosis’
is more complicated than most bioethicists seem to assume. Anne
Kerr’s work on the social construction of cystic fibrosis (CF) as a
genetic disease33 shows how, since the discovery of the gene
involved in CF causation in the late 1980s, the definition of
what counts as CF has expanded to include a form of male
infertility which was previously seen as a separate and distinct
30
Hoffmaster, op. cit. note 14, p. 1157.
31
O. Corrigan. Empty Ethics: The Problem with Informed Consent. Sociol-
ogy of Health and Illness 2003; 25: 768–792.
32
Fox & Swazey, op. cit. note 3.
33
A. Kerr. (Re)Constructing Genetic Disease: The Clinical Continuum
between Cystic Fibrosis and Male Infertility. Social Studies of Science 2000; 30:
847–894.

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128 ADAM M. HEDGECOE

condition. With a detailed analysis of a range of medical and


scientific papers, Kerr uncovers the internal debates over this
reclassification and highlights the variable and contingent ways
in which researchers propose genetic explanations. Of course
we need to debate the ethical principles involved in screening
new-borns for CF.34 But it would also be good if bioethicists
addressed the ethics of changing such disease classification in the
first place.
This ‘incompleteness’ problem is in part a product of philo-
sophical method. One of bioethics’ distinguishing methods is
‘conceptual analysis.’ But while such analysis can differentiate
between several different meanings of the concept ‘autonomy’,
for example, it cannot resolve substantive issues about this term.
It cannot establish which one of a number of competing concepts
of autonomy occurs in the clinic. Analysing concepts cannot go
on to settle a dispute over which is the ‘right’ kind of autonomy.35
One element of resolving such a dispute requires comparison
with how autonomy occurs in clinical settings, how patients view
their autonomy (and that of doctors and other staff) and how
difficult decisions are reached. None of this can be provided
by bioethics as it is conventionally conceived. The gap between
bioethics and what goes on in the clinic is such that: ‘taking
medical ethics to be “applied” moral philosophy simply does
not fit the experience of those who have spent time in clinical
settings.’36
One solution to this empirical impoverishment is a radical
restructuring of bioethics to such an extent that: ‘medical ethics
would become a very different enterprise: The boundaries
between social science and philosophy, between the normative
and the empirical, would come close to disappearing.’37 A vocal
proponent of such change is the philosopher Barry Hoffmaster
who endorses the adoption of ethnography as the way to ‘save’
bioethics. Simply put, ethnography is the classic anthropological
method (though also used by sociologists) where the investigator
enters into a particular setting, observes its rituals, customs and
beliefs, talks to the people there, perhaps even joins in certain
aspects of their daily life, but maintains a distance from those

34
E.g. G. Hermerén. Neonatal Screening: Ethical Aspects. Acta Paediatrica
1999; Suppl. 432: 99–103.
35
Hoffmaster, op. cit. note 29, pp. 1422–1423.
36
Ibid. p. 1424.
37
R. Zussman. The Contribution of Sociology to Medical Ethics. Hastings
Center Report 2000; 30: 7–11, p. 10.

© Blackwell Publishing Ltd. 2004


CRITICAL BIOETHICS 129

studied to allow reflection on the way in which the particular


setting works.38
Building bioethics around such a method would have a deep
and wide-ranging effect on the nature of the discipline. The focus
would be on the lived experience of doctors and patients, how
they make ethical decisions and talk about them. It would be
‘bottom up’ rather than ‘top down.’ And it is not at all clear what
role philosophical thinking would play in such a reoriented
bioethics. One problem with this extreme way of combining
bioethics and the social sciences is that it unproblematically pre-
sents ethnography as the way to incorporate social science into
bioethics.39 But it is not clear that as a method, ethnography is
suitable for use by bioethicists, with at least one experienced
ethnographer regarding it as, in certain ways, unethical.40 What-
ever the result of this debate, we should remember that there are
other social science methodologies which we can use to explore
bioethics. A number of studies have looked at topics in bioethics
with empirical methods such as: prenatal testing using question-
naires;41 parents’ consent to their children’s medical treatment
using interviews;42 the public’s view on limits to human genetic
research using focus groups.43 A range of methods is available to
explore ethical decision-making in relation to medicine and new
technologies.
In addition to these methodological worries about Hoffmas-
ter’s approach, it is not clear what intellectual space there would
be for the philosopher in his version of bioethics. Rather than
incorporating the best aspects of bioethics and social science,
Hoffmaster seems to be advocating an aggressive take-over bid,
which would reduce the role of the philosopher to a worryingly
unspecified level. One aim of this current paper is to outline
an alternative position, which incorporates social sciences into
bioethics in a more equitable manner.
38
Kleinman, op. cit. note 28, p. 77.
39
Hoffmaster, op. cit. notes 29 and 14; R.C. Fox & R. DeVries. 1998. After-
ward. In Bioethics and Society: Constructing the Ethical Enterprise. R. DeVries &
J. Subedi, eds. Upper Saddle River, NJ. Prentice Hall.
40
Bosk, op. cit. note 3, p. 65; C.L. Bosk. 2000. Irony, Ethnography, and
Informed Consent. In Bioethics in a Social Context. B. Hoffmaster, ed. Philadel-
phia. Temple University Press: 199–220; Zussman, op. cit. note 37. For a reply to
these concerns see: B. Hoffmaster. 2000. Afterward. In Hoffmaster, ibid.
41
A. Kolker & B.M. Burke. 1998. Prenatal Testing: A Sociological Perspective.
Second edition. Westport, Conn. Bergin and Garvey.
42
Alderson, op. cit. note 27.
43
A. Kerr, S. Cunningham-Burley & A. Amos. The New Genetics and Health:
Mobilizing Lay Expertise. Public Understanding Of Science 1998; 7: 41–60.

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130 ADAM M. HEDGECOE

Summary
Despite these concerns, the main complaints about bioethics
outlined above do, I think, hold true:
• bioethics, founded on philosophy, gives a dominant role to
idealised, rational thought;
• it tends to position individuals as the sole judge in ethical deci-
sion-making, in that it relegates social and cultural aspects to
the status of at best, curios, and worst irrelevancies;
• the applied ethics model assumes that social reality cleaves
down neat philosophical lines, with theoretical categories
matching those in social reality: i.e. that what a philosopher says
is the doctor-patient relationship actually represents the rela-
tionship between doctors and their patients in all settings.
Consequently, bioethics does not have the right tools to
resolve substantive moral problems, external to these cate-
gories themselves.

III. THE PHILOSOPHER’S RESPONSE


This section presents three responses to the social science critique
that those based within philosophical bioethics could make.

Fact vs. value


The first position rejects a significant role for the social sciences
in bioethics and revolves around the age-old distinction between
fact and value. Its modern incarnation can be found in
Beauchamp and Childress’ well-documented separation of nor-
mative ethics (what ought to be the case) from descriptive ethics
(what is the case). They discuss ‘descriptive ethics’ in the first
chapter of their classic text Principles of Biomedical Ethics, calling it:
‘the factual investigation of moral conduct and beliefs. It uses
scientific techniques to study how people reason and act.’44
Although Beauchamp and Childress no longer class descriptive
ethics as secondary to the enterprise of ‘normative ethics’,45 they
are clear that bioethics involves finding ethical justification for
particular actions, and that descriptive ethics is not part of main-
stream bioethics research.

44
Beauchamp & Childress, op. cit. note 7, p. 2.
45 This statement was made in the 1979, first edition, of Principles of Biomed-
ical Ethics but was removed in subsequent editions (pointed out in Hoffmaster,
op. cit. note 40).

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CRITICAL BIOETHICS 131

The first problem with this position is that the division between
ethical justification (the realm of bioethics) and ethical under-
standing (what social scientists look at) does not accurately rep-
resent moral decision-making. When sociologists and other social
scientists study how doctors, nurses, patients (and other people
beyond the medical setting) make decisions which involve
an ethical dimension they find that: ‘a rigorous separation of
the descriptive and the normative is practically untenable.’
Such a separation ‘seems to be simply an artefact of the theoret-
ical project of justification, not an intrinsic feature of moral
experience.’46
Social scientists have presented detailed research disputing the
descriptive/normative division.47 There is empirical evidence that
the fact/value distinction is at best overstated, and at worst a
figment of philosophical imagination. From within the applied
ethics model, one might feel that the social scientists are confus-
ing moral epistemology with social reality. But such a view has to
remain a personal opinion rather than a justified intellectual
point of view, since that would involve presenting evidence and
the role of evidence is not admitted by this position.
The refusal to take social science seriously is all the more ironic
if one considers the kinds of empirically testable statements that
philosophers make about ethics. The bioethics literature contains
testable, potentially disputable statements, presented as fact. A
good example of this can be found in Beauchamp and Childress’
discussion of ‘Top-Down Models’ of ethical decision making. Such
a model ‘holds that we reach justified moral judgements through
a structure of normative precepts that cover the judgement . . .
This model is simple and conforms to the way virtually all persons
learn to think morally.’48 The breadth of this empirical statement is
matched only by the lack of evidence for such a claim. No psy-
chological studies are cited supporting the role of theories in
individual ethical development, nor are there cross-cultural
reports comparing the use of theories in ethical education in
other cultures. This statement is not necessarily wrong, it is just

46
Hoffmaster, op. cit. note 40, p. 2.
47 E.g. Chapter 9 of Alderson, op. cit. note 42; S.R. Kaufman. Construction
and Practice of Medical Responsibility: Dilemmas and Narratives from
Geriatrics. Culture, Medicine and Psychiatry 1997; 21: 1–26; M. Lock. 1998. Per-
fecting Society: Reproductive Technologies, Genetic Testing, and the Planned
Family in Japan. In Pragmatic Women and Body Politics. M. Lock & P.A. Kaufert,
eds. Cambridge. Cambridge University Press: 206–239.
48
Beauchamp & Childress, op. cit. note 7, p. 385, emphasis added. Also on
p. 14 of the fourth edition.

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132 ADAM M. HEDGECOE

that on the basis of what these authors provide, we have no way


of knowing whether it is right or not. Such a relaxed use of empir-
ical claims does no good for the theories being proposed, or for
applied ethics as a whole.49 Of course, social scientists are not
immune from over-stating their positions and going beyond their
empirical evidence.50 But at the core of the social sciences is a
commitment to root one’s ideas in social reality, which it is not
necessarily the case with philosophy.
Another objection to this position comes from the roots of
moral philosophy and its acknowledgement that: ‘moral theory
begins in and ultimately must be tested by practice. It is hard to
find a philosopher for whom practice does not remain the touch-
stone of the adequacy of moral theory.’51 Hoffmaster cites
Aristotle, Sidgwick and even Kant as moral theorists for whom
practice is the proper and full test of any moral theory. Thus even
moral theory, the basis for bioethics, has to be judged in terms of
practice. To isolate bioethics from the nature of moral practice is
to lose touch with what bioethics is for.

The linear model


The ‘linear model’52 of bioethics accepts that social science can
play a vital role in the exploration of moral dilemmas in medicine
since: ‘Only empirical investigations can reveal to us the major
problems actually faced by health care providers and the ways in
which they deal (or think they deal) with them.’53 This position
suggests that if bioethics is interested in the ethics of medical prac-
tice, then to ignore how medicine is practised makes no sense.
Brody gives the example of the gap between ‘do not resuscitate

49
While I am not claiming that all bioethicists make such statements, or even
that a majority do (since this would require empirical research beyond the range
of this article), I simply note that it is disturbing that the fourth and fifth edi-
tions of one of the most widely read and critiqued books in bioethics should
contain such an apparently unsubstantiated claim. I suggest that this is less
to do with the failings of individual authors, and more about the institutional
attitude of bioethics towards the social sciences as a whole.
50
For a critique of this see: A. Hedgecoe. Geneticization, Medicalisation and
Polemics. Medicine, Healthcare and Philosophy: A European Journal 1998; 1: 235–243.
51
Hoffmaster, op. cit. note 29, p. 1427.
52
This term is taken from: J.L. Nelson. Moral Teachings from Unexpected
Quarters: Lessons for Bioethics from the Social Sciences and Managed Care.
Hastings Center Report 2000; 30: 12–17.
53
B.A. Brody. Quality of Scholarship in Bioethics. Journal of Medicine and
Philosophy 1990; 15: 161–178, p. 162.

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CRITICAL BIOETHICS 133

protocols’ drawn up by bioethicists and the reality of such deci-


sion-making in the clinical setting: the large number of questions
that doctors ask themselves that these protocols ignore, and the
kinds of alternative procedures that are options that the protocols
fail to mention.54 From this point of view, failure to get the social
science right is a failure to do bioethics well.55
This makes sense if we consider bioethicists’ attitude towards
biological science, and the need for bioethics to ‘get the science
right.’ A bioethicist who failed to get the science right when dis-
cussing, for example, stem cell therapy would not be taken seri-
ously. If bioethics is about the problems of medicine and biology,
then it is reasonable to expect the discussion of the science to be
as accurate and as up-to-date as possible. Of course, bioethicists
rely on thought-experiments and ‘what if’ science fiction specu-
lation some of the time. But when writing about the ethical
dilemmas involved in a particular surgical technique for example,
a bioethicist’s credibility depends, to some extent, on getting the
details of that technique right. All the linear model asks is that
bioethicists try to get the details of people’s beliefs and attitudes
right as well.
Encouraging as this position is (especially as leading bioethi-
cists support it56), it does not satisfy the core objections of the
social science critique, concerning the top down, applied ethics
model of bioethics. Even worse from the critics’ point of view, it
presents social science as a supporting, subsidiary discipline to
philosophical bioethics:
It makes the social scientist a junior partner to the philosopher,
someone who responds to ideas generated elsewhere but who
generates few if any ideas on his or her own. The sociologist
becomes a technician and little more.57
The social scientist contributes little to theoretical discussions
about the role of particular ethical theories. Although the linear
model is a vast improvement on the previous position, it still fails
to incorporate social science into the theoretical level, and dis-

54
Ibid. p. 163.
55
Examples of work carried out in this vein include: D.W. Robertson. Ethical
Theory, Ethnography, and Differences between Doctors and Nurses in
Approaches to Patient Care. Journal of Medical Ethics 1996; 22: 292–299; A.
Braunack-Meyer. Casuistry as Bioethical Method: An Empirical Perspective.
Social Science and Medicine 2001; 53: 71–81.
56 E.g. Callahan, op. cit. note 24; T. Hope. Empirical Medical Ethics. Journal

of Medical Ethics 1999; 25: 219–220.


57
Zussman, op. cit. note 37, p. 10.

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134 ADAM M. HEDGECOE

tance itself from the problems of simply applying ethical theory.


Hence the need for a ‘critical bioethics.’

Critical bioethics
The term critical bioethics is borrowed from Lisa Parker,58 and
involves critical self-reflection on the nature of bioethics and the
decisions it supports. It is an alternative to both the social science
critique and the two philosophical responses to it described
above. It incorporates social science research but is firmly rooted
in philosophical bioethics, requiring a change in perspective, and
a willingness to limit the kinds of claims about ethics that can be
made. The next section presents a number of features that char-
acterise critical bioethics, and illustrates them with examples from
the social science literature.

IV. FEATURES OF A CRITICAL BIOETHICS


Although much of the above might come across as negative, and
undermining of philosophical bioethics, this would be an overly
sensitive interpretation of my position. Although sceptical about
many aspects of traditional bioethics, I am convinced not just that
we need ethical work on new medical technologies, but also that
philosophy is a crucial discipline in such work. Bioethics without
a philosophical input would lack much of the rigour and the ‘bite’
that modern medical ethics has. As Zussman notes, an ethics that
simply documents the ethical practices of a specific environment
could be rather conservative, propping up, rather than challeng-
ing, unsavoury systems and practices. It would:
run the risk of losing what is probably the most important con-
tribution of medical ethics over the last quarter century:
precisely the ability to import into medicine a set of ethical stan-
dards that are not native to the occupational and organiza-
tional cultures of medicine itself.59
Critical bioethics must be more than purely descriptive if it is to
judge the decisions and choices it documents. It is possible
to carry out empirical research in a medical setting, apply social
scientific methodology, and maintain a critical stance with regard

58
L.S. Parker. Breast Cancer Genetic Screening and Critical Bioethics’ Gaze.
Journal of Medicine and Philosophy 1995; 20: 313–337.
59
Zussman, op. cit. note 37, p. 10.

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CRITICAL BIOETHICS 135

to the world you are exploring.60 A useful comparison can be


made with the debate over what role, if any, anthropologists
can or should play in the promotion of human rights. While the
conventional view might be that as researchers, anthropologists
must remain ‘hands off’, a convincing case can be made that
anthropology has fostered and furthered human rights in a
number of cases (especially those of indigenous peoples).61
Critical bioethics can be just that: critical. The importance of
empirical research should not stop critical bioethicists from
making normative judgements.
DeVries and Conrad point out a couple of benefits for bioethics
that might come from a more open attitude towards social
science. If the core goal of bioethics is to ‘provide an independent
and reasoned voice in medical decision making’, then sociology pro-
vides a richer understanding of bioethical decisions, benefiting
those wanting to reason about such a topic. In addition, the rel-
ativistic ‘debunking’ nature of sociology can help bioethics main-
tain its independence by highlighting the power relationships
that shape the profession.62 Such independence is all the more
vital given recent concerns over the potential co-option of bioethi-
cists by commercial interests.63
Put like this, social science seems less of a threat to traditional
bioethics and more like a opportunity to improve the way ethical
work is done, and expand the range of topics open to ethical
scrutiny. In the remainder of this section I will present a few of
the characteristics that I think will be needed for a piece of work
to be called ‘critical bioethics.’

Empirically rooted
Critical bioethics is rooted in empirical research. The problems,
dilemmas and controversies analysed come from looking at a

60
E.g. Renee Fox and Judith Swazey’s work in a transplant unit where they
conclude that transplant surgery has become ‘overly zealous’ and has led to
‘human suffering and . . . social, cultural and spiritual harm.’ R.C. Fox & J.P.
Swazey. 1992. Spare Parts: Organ Replacement and American Society. Oxford. Oxford
University Press: 210.
61
E. Messer. Anthropology and Human Rights. Annual Review of Anthropol-
ogy 1993; 22: 221–249; R.A. Wilson. 1997. Human Rights, Culture and Context:
Anthropological Perspectives. London. Pluto Press.
62
DeVries & Conrad, op. cit. note 26, p. 234, all emphasis in original.
63
C. Elliott. Throwing a Bone to the Watchdog. Hastings Center Report 2001;
31: 9–12.

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136 ADAM M. HEDGECOE

particular setting (e.g. the clinic), talking to participants and


taking note of what they say. In this sense, critical bioethics is a
resolutely ‘bottom up’ approach to ethics. This does not mean
that philosophers have to become social scientists; simply that if
they are interested in the ethics of a particular technology, their
first port of call should be the social science literature about that
technology, rather than the standard bioethics debates.
For example, in her detailed and extensive investigation into
prenatal testing for Down Syndrome, Rayna Rapp64 shows how
one of the least important issues for women contemplating pre-
natal testing and/or abortion is the moral status of the embryo.
Although a ‘classic’ topic of concern for bioethicists,65 a more
important factor for these women is the impact the birth of a
disabled child might have on already existing people and
relationships:
Under circumstances of extreme misfortune, they reasoned
that the burdens of motherhood tipped against the present,
diagnosed fetus in favour of their commitments to other
children, adults and themselves.66
It is not that these women do not think about the foetus, that they
‘blank’ it out from their thoughts, but that their reasoning about
what is important is different to that presented in bioethics texts.
This implies that bioethicists who wish to engage with ethical deci-
sions as they are lived in the real world would be better employed
turning their attention towards the rights and duties (or princi-
ples, or utilitarian calculations) that are involved in relationships
with other people, and how these are affected by the arrival of a
Down’s baby, rather than the moral status of the embryo.
Of course, bioethicists could object that however powerful
these women’s understanding of prenatal screening is, it is simply
the subjective experience of a stressful, emotional medical inter-
vention, and that as such, it has no role to play in a rational con-
sideration of the ethics of prenatal diagnosis. As Rapp notes,
‘It is hard to break into such a hermetic and self-confident

64 R. Rapp. 2000. Testing Women, Testing the Fetus: The Social Impact of Amnio-

centesis in America. New York. Routledge.


65 E.g. D. Beyleveld. 2000. The Moral Status of the Human Embryo and

Fetus. In The Ethics of Genetics in Human Procreation. H. Haker & D. Beyleveld,


eds. Aldershot. Ashgate; J. Harris. 1990. Embryos and Hedgehogs: On the Moral
Status of the Fetus. In Experiments on Embryos. A. Dyson & J. Harris, eds. New
York. Routledge.
66 Rapp, op. cit. note 64, pp. 307–308.

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CRITICAL BIOETHICS 137

narrative’,67 but her response is to describe the women she talked


to as ‘moral philosophers of the private.’ And it is these women
who are genuine applied philosophers, working through a moral
dilemma, using values and beliefs about morality to reach a deci-
sion that they then have to put into practice. Unlike most bioethi-
cists, these women really do get to apply their philosophy. Perhaps
this will still not convince the die-hard philosophical bioethicist,
but it is a position that requires more engagement than simple
dismissal.68

Theory challenging
In critical bioethics, the results of empirical research feed back to
challenge, and even undermine, an analyst’s cherished theoreti-
cal frameworks. While it is perfectly possible for social science
research to support the principalist approach (for example), it is
also quite likely that in some, if not many cases, the evidence will
not fit into this particular way of structuring the social world. In
this situation it is important that the analyst not retreat into philo-
sophical evasion (‘all other things being equal . . .’ or ‘with the
irrelevant complexities cleared away . . .’) but accept that in this
case the principalist ideas do not hold true.
Priscilla Alderson tests various theoretical frameworks against
a case she came across in her research into proxy consent and
allowing adults to make medical decisions for their children.69
She finds that no single ethical theory helps the parents and
doctors in the case, since there are many different competing
interests and perspectives on the medical problem in question.
‘To assume that there can be one neutral answer for all similar
cases is to deny individual people’s interests and values.’70 This
does not mean that philosophical ethical theories (covering
all levels of aempirical speculation, not just traditional meta-
theoretical issues) are worthless, simply that critical bioethics
tests its theories in the light of empirical experience, and changes
them as a result. Of all people, it is Beauchamp and Childress,

67 Ibid. p. 45.
68 I accept that many feminist bioethicists would have no problem at all with
Rapp’s work, and would tie it into Carol Gilligan’s ‘ethics of care’ (C. Gilligan.
1982. In a Different Voice: Psychological Theory and Women’s Development. Cambridge
and Oxford. Oxford University Press). As I have made clear, the focus of this
paper is the dominant form of bioethics as applied ethics, rather than those
traditions that have grown up in response.
69 Alderson, op. cit. note 42.
70 Ibid. p. 206.

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138 ADAM M. HEDGECOE

defenders of normative bioethics, who provide the best summary


of the proper relationship between theory and practice:
cases provide data for theory and are theory’s testing ground
as well. Case leads us to modify and refine embryonic theoret-
ical claims, especially by pointing to inadequacies in or limita-
tions of theories.71
Critical bioethics simply applies this testing element of practice
to mature, as well as ‘embryonic’ theories. All ethical theories are
subject to revision. This, of course, undermines elements of the
universalist stance adopted by traditional philosophical bioethics,
a high, perhaps unacceptable, price for the philosopher to pay to
engage with critical bioethics. But it is hard to see how one can
take social science seriously and at the same insist on one’s ethical
conclusions having an absolute and universal application, without
evidence to support such a claim.

Reflexive
Reflexivity is a broad term acknowledging the inter-linked nature
of subject and object. At its most simple, it ‘presupposes that,
while saying something about the “real world”, one is simultane-
ously disclosing something about oneself.’72 In describing
and representing the world, we necessarily constitute that world;
how a researcher reports things impacts upon those things
being reported on. For many theorists, reflexivity is not an
optional ‘extra’ but an integral part of knowledge production.
The issue is whether one then acknowledges reflexivity or tries to
mask it.
In critical bioethics, reflexivity works on a number of different
levels. At the most personal, it is about knowing where we come
from and, as bioethicists, being self-aware. Who we are in terms
of class, ethnicity, profession, religion, sexuality, education
and experience of medical settings (how many times we have
had surgery for example) shape our instinctive and intellectual
responses to biomedical technologies. An assumption of tradi-
tional bioethics is that by thinking hard in a special way, one can
abstract one’s mental faculties from this context and make pure,
rational ethical decisions. In critical bioethics, reflexivity is about

71 T.L. Beauchamp & J.F. Childress. 1989. Principles of Biomedical Ethics.

Second edition. New York. Oxford University Press: 16.


72 D. Pels. Reflexivity: One Step Up. Theory, Culture and Society 2000; 17: 1–25,

p. 1.

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CRITICAL BIOETHICS 139

acknowledging one’s personal context, but not accepting that this


undermines the legitimacy of one’s claims.
Reflexivity concerns not just an individual’s self-awareness, but
the nature of knowledge production itself. This is a particular
concern for some social scientists, who feel that reflexivity under-
mines knowledge claims and tends towards relativism,73 and some
of these fears have begun to seep into bioethics. The work of Tod
Chambers in particular has disturbed conventional images of the
value-neutral case study, and the objectivity of bioethics writing.74
His literary analysis of the way in which bioethicists write, what
they mention, what they leave out, the rhetoric they use to con-
struct their arguments, has led some to fear that he leads bioethics
towards ‘rhetorical nihilism’ and ‘moral relativism.’75 How are
bioethicists to write case studies if they are made ‘self-conscious’
about the nature of their writing?76
Solutions to such self-consciousness can be borrowed from the
sociology of scientific knowledge (SSK) which has been grappling
with these issues for a while. They range: from acknowledging the
importance of reflexivity but not letting it interfere with the way
one works;77 through including a running commentary on the
rhetorical techniques one is using in the form of footnotes or
another authorial voice; to writing up one’s research in the
form of a one-act play, to get round the conventions of traditional
types of publication.78
Extreme as this latter solution is, the point is that reflexivity
should not stop bioethicists working. It simply roots particular
claims in a specific time and a place, acknowledges the social and

73
For a good review of some of the issues involved, see: S. Woolgar. 1991
edition. Knowledge and Reflexivity: New Frontiers in the Sociology of Knowledge.
London. Sage.
74
T. Chambers. From the Ethicist’s Point of View: The Literary Nature
of Ethical Inquiry. Hastings Center Report 1996; 26: 25–33; 1999. The Fiction
of Bioethics: Cases As Literary Texts. New York. Routledge; Centering Bioethics.
Hastings Center Report 2000; 30: 22–29; The Fiction of Bioethics: A Précis.
American Journal Of Bioethics 2001; 1: 40–43.
75
A. Frank. Rhetoric, Moral Relativism and Power. American Journal Of
Bioethics 2001; 1: 51–52.
76 C. Elliott. What We Talk about when We Talk about Right and Wrong.

American Journal Of Bioethics 2001; 1: 52–53.


77
For example, see: G. Myers. 1990. Writing Biology: Texts in the Social
Construction of Scientific Knowledge. Madison, Wisconsin. University of Wisconsin
Press.
78
M. Mulkay. 1985. The Word and the World. London. Allen and Unwin;
M. Ashmore. 1989. The Reflexive Thesis: Wrighting Sociology of Scientific Knowledge.
Chicago. University of Chicago Press.

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140 ADAM M. HEDGECOE

cultural influences that make us who we are, but does not mean
that we cannot say anything meaningful about other people’s lives
or about their choices. It makes us think about how bioethics
came to occupy the position it does in medical settings and
education, and raises issues of power and authority that we would
perhaps, rather not think about.79

Politely sceptical
DeVries and Conrad allude to the ‘debunking’ nature of sociol-
ogy, and this is another useful tool up the critical bioethicist’s
sleeve: polite, informed scepticism about the claims of not just
other bioethicists but, perhaps more importantly, the claims of
the doctors, patients and scientists who provide the empirical
element. ‘Polite’ means one does not necessarily dispute matters
with these people; but the sceptical element means accepting that
the truth is often more complex than people claim.
A good example of this is the kind of scepticism brought to sci-
entific claims by constructivist sociologists of science. Consider
the recent debate in a special issue of Bioethics over the use of
placebo trials in developing countries to test a cheap alternative
to the ‘076’ protocol, which is standard in western countries and
which cuts the transmission of HIV from mother to foetus from
25% to 8%. Unfortunately, the 076 regimen costs over US$800,
hence the search for an alternative that uses less AZT, is cheaper
and thus maybe viable for developing countries. The debate in
the special issue is led by a paper from David Resnik,80 followed
by a number of responses from different authors81 and a final
reply from Resnik. The research that would be of use in this
debate is work carried out by Steve Epstein,82 which could have

79
Of course there are bioethicists who reflect upon their own role and the
nature of bioethics as a whole. Carl Elliott (1999. A Philosophical Disease: Bioethics,
Culture and Identity. New York. Routledge) is a good example, as are many of
Daniel Callahan’s pieces which focus on the nature of bioethics and how it has
changed over the years: Doing Good and Doing Well. Hastings Center Report 2000;
31: 19–21; Religion and the Secularization of Bioethics. Hastings Center Report
1990; 20: S2–S4.
80
D.B. Resnik. The Ethics of HIV Research in Developing Nations. Bioethics
1998; 12: 286–306.
81
E.g. R.K. Lie. Ethics of Placebo-Controlled Trials in Developing Countries.
Bioethics 1998; 12: 307–311; U. Schüklenk. Unethical Perinatal HIV Transmission
Trials Establish Bad Precedent. Bioethics 1998; 12: 312–319.
82
S. Epstein. 1996. Impure Science: AIDS, Activism and the Politics of Knowledge.
Berkley. University of California Press.

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CRITICAL BIOETHICS 141

added to discussions of ‘clinical equipoise’83 or the attitude of


people enrolled in these trials, and their access to medical treat-
ment84 or any number of other points.
I am not claiming that all Steven Epstein’s results directly map
onto debates over clinical trials in the developing world; his con-
clusions are specific to the time, place and socio-economic group-
ings that he studies (mainly homosexual AIDS activists in the US
in the 1980s and early 1990s). But what we can take from his work
is that: ‘The notion that a “definitive” clinical trial can settle
the question of drug efficacy . . . misses this fundamental point: a
study’s “definitiveness” is not given but is a negotiated outcome
and one that may be actively resisted by some parties to the con-
troversy.’85 This sceptical approach to scientists’ claims allows
bioethicists to ‘unpack’ ethically controversial topics like clinical
trials, and analyse the interests that underpin some of the claims
made about the objectivity and reliability of scientific results. The
debate in Bioethics largely assumed that scientific claims about the
‘reality’ of such clinical trials (with or without placebo) could only
be challenged on ethical, rather than epistemological, grounds.
By adopting the perspective of the sociology of science, new issues
open up for ethical consideration: how scientific opinion about
the validity of clinical trials varies; the influence of different
organisations (activists, patients, regulators, funders, universities,
companies) on the nature of different trials; and the nature of
regulations for clinical trials.

V. CONCLUSION: TAKING SOCIAL SCIENCE SERIOUSLY


Why should bioethics take social science seriously? After all,
bioethics has done rather well over the past ten years. The rise of
new technologies has given professional bioethicists a voice in the
media and as consultants to industry. The 5–7% of the Human
Genome Project’s funds dedicated to social and ethical research
resulted in significant money being directed towards bioethics
programmes, bioethics courses are expanding in number and the
media profile of some members of the profession is impressively
high. Even the fact that we can describe bioethics as a ‘profession’
at all indicates some degree of respectability.86
83
Resnik, op. cit. note 80, p. 290; ibid. p. 251.
84
C. Del Río. Is Ethical Research Feasible in Developed and Developing
Countries. Bioethics 1998; 12: 328–330.
85
Epstein, op. cit. note 82, p. 334.
86
K.Y. Kreeger. Burgeoning Crop of Bioethics Programs and Courses
Reflects the Deepening of Scientist’s Moral Concerns. The Scientist 1994; 8: 1.

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142 ADAM M. HEDGECOE

Yet encouraging as this must be for philosophers, it is not clear


that bioethics has had much impact on decision-making about
these new technologies, or on the world of policy as a whole. A
number of policy makers at a number of different levels have, over
the past few years, complained about the lack of empirical evi-
dence relating to topics such as human genetics and surrogacy.87
For these people, the problem is not a lack of speculation about
the possible long-term societal effects of surrogacy arrangements,
but the need to find out how surrogacy affects people’s lives here
and now.
For bioethics, the danger is of being sidelined. Of course, at
the moment, bioethicists far outnumber social scientists on gov-
ernment advisory committees. Yet this may be more a result of
historical contingency than a mark of philosophy’s strength. The
kinds of answers required by policy-makers are the kinds of things
that social scientists are better at providing. Unless bioethicists
can engage with these answers in a meaningful way, they run the
risk of being cut out of the policy-making loop, and being isolated
from the kinds of decisions that bioethics has always aspired to
influence.88
For some social scientists, the isolation of bioethics from the
policy-making process might come as suitable come-uppance for
the perceived high-jack (from the social sciences) and subsequent
dominance of questions of value and ethics in medicine.89 But the
policy arena with bioethics removed would be sadly impoverished,
lacking the benefits that philosophical analysis can bring to such
discussions. At the same time, critical bioethics requires philoso-

87
House of Commons Science and Technology Committee. 1995. Third
Report: Human Genetics: The Science and its Consequences. London. HMSO; O.
O’Neill. What would the HGAC have liked to Know about Genetics Research?
Presentation at ‘The Wellcome Trust Society and Genetics: Research Training
Course’, 11–14 September, 1999. Hinxton Hall, Cambridge; M. Brazier, A.
Campbell & S. Golombok. 1998. Surrogacy: Review for Health Ministers for Current
Arrangements for Payments and Regulation. London. Department of Health; T.
Wilkie. Navigating the Moral Maze: The Biomedical Ethics Programme. Wellcome
News 1998; 14: 8–9.
88
R.W. Momeyer. Philosophy and the Public Policy Process: Inside, Outside,
or Nowhere at all? Journal of Medicine and Philosophy 1990; 15: 391–409; D.
Stemerding & J. Jelsma. Compensatory Ethics for the Human Genome Project.
Science as Culture 1996; 5: 335–351; S. Lehrman. What ever Happened to ELSI?
Geneletter 2000; 1: http://www.geneletter.com/08-01-00/features/elsi.html.
89
Charles Bosk points out: ‘the contribution of sociologists to topics bioeth-
ical is as remarkable as it is unappreciated . . . the sociological involvement with
these issues predates bioethics as either an organized domain of inquiry or an
emergent professional occupation’ (Bosk, op. cit. note 40, p. 398).

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CRITICAL BIOETHICS 143

phers to accept that there are some questions that they cannot
answer, and that trying to answer them through adopting certain
philosophical methods may be counter productive.90
This list of features for a critical bioethics is tentative and others
may want to add or subtract elements. What I have proposed is
not a methodology, but more a way to help bioethicists develop a
‘sociological imagination.’91 Of course the demands of critical
bioethics may conflict with traditional philosophical research, but
it is worth noting that bioethicists seem quite capable of carrying
out empirical social science research, without losing their sense
of disciplinary identity, while accepting that the way things are can
tell us something about the way things ought to be.92
Yet until such work is attempted, we will not know whether a
critical bioethics is possible. It seems a very modest proposal that
traditional bioethics engage with the social sciences through
adopting these basic features.

Adam M. Hedgecoe
Department of Sociology
School of Social Sciences
University of Sussex
Falmer
Brighton
BN1 9QN
UK
[email protected]

90
For example, thought-experiments or analyses which rely on ideas like ‘it
is conceivable that’ as the basis for action can be applied to questions best
answered by empirical research. But the end result of such philosophical work
does not answer these questions in any helpful way.
91
Both DeVries & Conrad, op. cit. note 26, and Charles Bosk, op. cit. note 40
adopt C. Wright Mills’ famous phrase: C.W. Mills. 1959. The Sociological Imagi-
nation. New York. Oxford University Press.
92
E.g. S. Hølm. 1997. Ethical Problems in Clinical Practice. Manchester and New
York. Manchester University Press; or the work of Laura Siminoff and colleagues:
J.G. Adams, R. Arnold, L. Siminoff & A.B. Wolfson. Ethical Conflicts in the
Prehospital Setting. Annals of Emergency Medicine 1992; 21: 1259–1265; S.K. Hoge,
C. Lidz, E. Mulvey, L. Roth, N. Bennett, L. Siminoff, R. Arnold & J. Monahan.
Patient, Family, and Staff Perceptions of Coercion in Mental-Hospital Admission
– An Exploratory-Study. Behavioral Sciences & the Law 1993; 11: 281–293; L.A.
Siminoff, R.M. Arnold & J. Hewlett. The Process of Organ Donation and its
Effect on Consent. Clinical Transplantation 2001; 15: 39–47. I am not claiming
that what these authors are doing is ‘critical bioethics’ or that they would agree
with the whole of this paper, simply that their work supports the idea that a
critical bioethics is methodologically possible.

© Blackwell Publishing Ltd. 2004

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