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Monash Bioethics Review Vol. 19 No.4 51 October 2000 Smyth seems concerned, or at least puzzled, that salient bioethical issues sometimes fade from view, perhaps because 'bioethics is no longer seen as being helpful or relevant.' But the issues that are the focus of bioethics evolve, as they should. Sometimes this is because new issues move to center stage as changing circumstances generate the need for attention. This has happened here in precisely some of the ways Smyth seeks . That is, bioethics here is concerned pervasively with issues that go beyond individual cases. The conferences and publications are filled with discussions of the impact of organizational structures on quality of care, the values that are challenged or advanced by an increased focus on preventive vs. curative goals, the challenges to privacy of electronic medical data bases, and the like. However, sometimes old issues recede from view because they have actually been adequately clarified and resolved! We no longer have much vigorous debate about the legitimacy of withdrawing life support from patients in irreversible coma, or about having a. commercial market in transplantable organs, or about recognizing surrogate mother contracts as legally binding. We have had those debates, and bioethics has been and is known to have been crucial in helping shape the discussions that brought relative stability to these issues. Smyth's concluding call for an effective partnership between bioethics and policy development has appeal, but only insofar as it is understood that bioethics is properly multi-faceted, not only in substantive viewpoint, but in the modalities by which it seeks to inform the agendas of inquiry, the standards of debate, and the contexts of deliberation. Not very long ago, health care itself was a minor aspect of social organization. Medical issues played out largely within families, and the healing professions, as important as they were at times to patients and families, were themselves marginalized with respect to the economic and political currents of society. In our lifetimes, that situation - many thousands of years old - changed radically. Health- related issues are now central to our national economies, research agendas, political developments, and even processes of cultural transformation. We need many and varied perspectives on how to find wisdom in this domain, and we need their voices to be diverse as well as clear and persistent. What is bioethics all about? LYNNGILAM Lecturer in Ethics at the Centre for the Study of Health and Society, University of Melbourne; and Ethics Unit, Murdoch ChUdren's Research Institute The idea that bioethics should become intimately involved in health policy formation, as Tim Smyth proposes, is at once attractive and troubling. Here I reflect briefly on both aspects, and end up finding

What is bioethics all about?

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Page 1: What is bioethics all about?

Monash Bioethics Review Vol. 19 No.4 51 October 2000

Smyth seems concerned, or at least puzzled, that salientbioethical issues sometimes fade from view, perhaps because 'bioethicsis no longer seen as being helpful or relevant.' But the issues that arethe focus of bioethics evolve, as they should. Sometimes this isbecause new issues move to center stage as changing circumstancesgenerate the need for attention. This has happened here in preciselysome of the ways Smyth seeks. That is, bioethics here is concernedpervasively with issues that go beyond individual cases. Theconferences and publications are filled with discussions of the impact oforganizational structures on quality of care, the values that arechallenged or advanced by an increased focus on preventive vs.curative goals, the challenges to privacy of electronic medical databases, and the like. However, sometimes old issues recede from viewbecause they have actually been adequately clarified and resolved! Weno longer have much vigorous debate about the legitimacy ofwithdrawing life support from patients in irreversible coma, or abouthaving a .commercial market in transplantable organs, or aboutrecognizing surrogate mother contracts as legally binding. We havehad those debates, and bioethics has been and is known to have beencrucial in helping shape the discussions that brought relative stabilityto these issues.

Smyth's concluding call for an effective partnership betweenbioethics and policy development has appeal, but only insofar as it isunderstood that bioethics is properly multi-faceted, not only insubstantive viewpoint, but in the modalities by which it seeks to informthe agendas of inquiry, the standards of debate, and the contexts ofdeliberation. Not very long ago, health care itself was a minor aspect ofsocial organization. Medical issues played out largely within families,and the healing professions, as important as they were at times topatients and families, were themselves marginalized with respect to theeconomic and political currents of society. In our lifetimes, thatsituation - many thousands of years old - changed radically. Health­related issues are now central to our national economies, researchagendas, political developments, and even processes of culturaltransformation. We need many and varied perspectives on how to findwisdom in this domain, and we need their voices to be diverse as wellas clear and persistent.

What is bioethics all about?LYNNGILAM

Lecturer in Ethics at the Centre for the Study of Health and Society, University ofMelbourne; and Ethics Unit, Murdoch ChUdren's Research Institute

The idea that bioethics should become intimately involved inhealth policy formation, as Tim Smyth proposes, is at once attractiveand troubling. Here I reflect briefly on both aspects, and end up finding

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myself in greater agreement with him that I felt at the outset.There is always something appealing about the idea that one's

personal views, or one's academic discipline, are so important that theyshould have a central role in the formation of government policy. Butbeyond this rather superficial boost to personal and professional vanity,there is a deeper merit, I believe, in Smyth's unstated but pervasiveassumption that bioethics ought to be out there in the policy arena,actively influencing policy development in health care. This has to dowith reminding us what bioethics actually is.

Bioethics is not just a neutral, abstract academic discipline,carried on in universities for the sake of its intrinsic interest. Ofcourse, I do not mean to deny that it does have intrinsic interest, orthat it could reasonably be pursued for the sake of its intrinsicinterest. Bioethics, I would argue, is a practice, something that is done,not just studied, and it is to be done in the hurly-burly of the world,not just in the academy. Bioethics as it has now evolved does not justtake health care and medical science as an interesting philosopher'sexample - it now has intimate connections with the world of healthcare, and a deep interest in how health care ought to be provided, onall levels, from individual patient consultations to the allocation of thehealth budget. In fact, I would say that it is this engagement with thereal world that distinguishes bioethics from applied moral philosophy,which is its major disciplinary base, at least in Australia.

I would also argue that bioethics is a value-based discipline, inthe sense that it is not just about moral values as abstract notions, butrather that its practice is underpinned and driven by moral values.Moral values, as moral philosophers generally concur, are by definitionaction-guiding. They urge commitment, a stance, action in the world.When a person doing bioethics (whom we must, I suppose, call abioethicist, despite the ugliness of the word!) reaches a moralconclusion, this is not simply an artefact of academic interest, it meanssomething, and perhaps will require that bioethicist to act in certainways - maybe to write to a newspaper, to lodge a complaint with anorganization, to speak out publicly in some way, or even to act in anattempt to stop something happening.

This makes bioethicists sound like activists - some readers are,no doubt, feeling a bit uncomfortable at this point, while others mayhave decided that I have gone completely over the top! Some years ago,I would have had the same view. When I first started in bioethics, Iregarded it purely as an academic discipline, with no specialconnections with real life. This was despite working at the MonashUniversity Centre for Human Bioethics with Peter Singer and HelgaKuhse, both of whom are well-known for taking an activist-type role onethical issues of concern to them (Peter in relation to animals inparticular, and Helga in relation to euthanasia). I somehow regardedthem as aberrations, rather than the norm for bioethicists: theiractivism, I thought, was a matter of their personal choice, notconnected with their academic work.

Over the years, however, I have changed my view quite

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considerably. It is not that I believe that all bioethicists must beactivists in the style of Peter Singer - many of us, coming from differenttheoretical perspectives, do not hold such starkly conclusive views onethical issues, nor do we have the personal attributes that are neededfor activism in this sense. But I do believe that where we do have a viewon a matter, we also have an obligation to act on that view in someway, and not to regard it as merely of academic interest. That is, Ibelieve that bioethics as a discipline ought to be characterised by theengagement with the real world that I mentioned earlier - suchengagement is not an optional extra.

So, whilst I certainly do not mean to set up bioethicists as latterday high priests, who tell the masses what to think and what to do, I dowant to argue very strongly that Smyth's idea that bioethics should beinvolved in policy development is not foreign to bioethics. It is, in fact,part of the territory. There is, of course, the problem of the leap from'bioethicists'to 'bioethics' - as many readers of Smyth's article have nodoubt noted to themselves, 'bioethics' is not a single uniform entity andcertainly does not have a single voice . 'Bioethics' cannot push 'its'view,because there is no such thing, and (as many of us are probablythinking) neither should there be. Bioethics rightly consists of a loosecollection of individuals, all with their own individual views. Whilst Itake this to be obviously true, we should not over-exaggerate itsimportance. Bioethicists and moral philosophers are prone toconcentrate on their differences, particularly their theoreticaldifferences, since this is where the academically challenging andinteresting part of bioethics lies, and ignore the areas on which weagree. Whilst this is quite natural and understandable, it does tend toblind us to what we could say in a unified voice about some of thethings that happen within health care and biomedical research, if wewould take the time to notice. Although we come from widely divergenttheoretical backgrounds, and hold sometimes radically differentfundamental values, there are some things on which we would allagree. (The much-maligned work of Beauchamp and Childress is, in myview, a salutary reminder of this)

One example of this would be the wrongness of subjectingpatients to dangerous experimental therapies without their knowledgeor consent. Shortly after I started work at Monash, I was asked to writean ethical evaluation of the Chelmsford deep sleep therapy, whichresulted in the deaths of several people. I recall thinking that this wasnot bioethics - there was no ethical issue to be explored, since it wasjust obvious that people had been treated wrongly. There was nothingto say (although I did find something, which to my mind then was verythin and boring). But of course at a policy level, there is much to say,and much that virtually all bioethicists could agree on, in terms of theimportance of ensuring that people receive full information and are ableto make free choices. We might think this blindingly obvious, andtheoretically uninteresting, but I suggest that is some quarters it isvital to say it, and that a bioethicist is the appropriate one to do thespeaking. For this reason, I find myself in general agreement with

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Smyth's idea that there ought to be systematic representation frombioethics on policy and planning bodies

However, the question remains of how to get the voice ofbioethics heard, and here I find myself disagreeing with Smyth. It istrue that some of the concerns that a bioethicist might raise at a policybody could appear on the agenda under 'Quality Assurance', 'RiskManagement' or some other similar rubric, but I think it would be quitewrong to take such an approach, for at least two reasons. One is thatissues of bioethical concern, if presented in this way, can only appearin a constrained, often attenuated way, and must always be moulded tosuit the language and ideology of the Trojan horse that we areattempting to conceal them in. We risk not being able to say what wereally mean. But more importantly, we would lose the ability to be thecritical outsider, which I regard as vital for any bioethicist genuinelyconcerned with the ethical nature of policy at any level. Taking on theguise- of quality assurance or risk management means identifying withand accepting the goals and values of the institution that sets up theseprocesses. Risk management, for example, is ultimately designed toprotect the organization from risk - not to protect its clients or patientsfrom risk. A voice from bioethics is useless if it cannot clearly separateitself from the often self-interested goals of an organization or policybody. Entering the fray in a Trojan horse might present an easy andeven apparently successful strategy, but in the long run I think thatthe really important battles will be lost.

In summary, then, I agree with Tim Smyth on the issue of therole that bioethicists ought to see themselves playing in public policy,although I disagree on how this might be achieved. But I certainly urgeall those who work in bioethics to take real notice of what Smyth has tosay, and to think carefully about the challenges that he presents,rather than dismissing it all with the thought that bioethics just isn'tlike that. Rather ask anew what bioethics really is - you may not agreewith my answer, but it will be well worthwhile to ask the question.

On the sideline or sidelined - Areply from Tim Smyth

In presenting my paper at the Australian Bioethics AssociationConference, I intended to provoke debate and I am pleased to see thatthis has been achievedl Mc Neill, Gorovitz and Gillam's commentsrightly flag that there are pros and cons that need to be considered inassessing roles that bioethics might play in policy development. Animportant point that conference participants made to me in discussionis that my use of the term 'bioethics' glosses over the diversity and widespectrum of views, goals and preferences amongst the players.

What has struck me about the commentary is my perceptionthat there appears to be an underlying assumption that there is only aWin/lose' tradeoff for bioethics if it chooses to move closer to centrestage in the policy development process. McNeill's use of a football