Hedgecoe Critical Bioethics
Hedgecoe Critical Bioethics
Hedgecoe Critical Bioethics
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
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
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
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
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
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.
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.
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
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.
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.
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.
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).
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.
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.
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
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.
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.
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.
64 R. Rapp. 2000. Testing Women, Testing the Fetus: The Social Impact of Amnio-
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.
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
p. 1.
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.
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.
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).
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.