Ethics

Marfan syndrome (MFS) is a multisystem disorder of connective tissue that is inherited in an autosomal dominant fashion, and results from mutations in the FBN1 gene on chromosome 15. Diagnosis is challenging as it requires definition of diverse clinical features and input from a variety of specialists. Genetic testing of FBN1 is time consuming, expensive and complex, and may not solve the diagnostic dilemma. Failure to make a diagnosis or making an inappropriate diagnosis of MFS has social, lifestyle and medical consequences for the individual as well as the family.

Kim M Summers BSc(Hons), PhD · Jennifer A West RN · Madelyn M Peterson BPharm, MA(Ethics) · Denis Stark MB BS, FRCS, FRACO · James J McGill MB BS, FRACP · Malcolm J West MB BS, FRACP, PhD

The recent publication, in prestigious scientific journals, of two major studies that were subsequently shown to contain fabricated data may compel reviewers and editors to adopt a more rigorous policy in accepting articles for publication. The current manner of peer reviewing research articles provides no assurance that the proffered work is not the result of fraud. The present guidelines for contributors in large team investigations may need to be updated to avoid giving credit to co-authors who may have made little, if any, contribution to the work.

Paul Gerber LLB, DJur

To the Editor: The arrest and imprisonment of 17 Australian-based suspected terrorists on 8 November 2005 underscores a need for Australian prison medical workers to implement strategies for either preventing or following up prison torture incidents. The definition of prison torture is problematic, not least because modern prisons evolved to sequester torture practices from public view.1 I define prison torture as custodial practices that: increase the likelihood of extreme deprivation in prison settings; facilitate traumatic stress on prisoners, resulting from beatings or excessive force used more as punishment than as restraint; result in inadequate or unaffordable health care; and/or expose prisoners to heightened risk of interpersonal violence and sexual assault. Advocates of prison torture regard it as a means of quickly extracting information, humiliating prisoners to the extent of weakening their resolve, and sending a “tough on crime” message to potential terrorists. However, as the well publicised Abu Ghraib prison incidents in Iraq demonstrate, torture practices diminish the moral clout of implicated military physicians and governments.2 Physical and psychological scars from torture commonly lead to depression, major disconnection of victims from friends and family, and occasionally suicide. Confessions obtained under torture conditions are inadmissible in modern legal systems. Moreover, graphic torture incidents may be framed by terrorist organisations as recruitment tools. The 1975 World Medical Association Declaration prohibits doctors’ involvement in torture.3 Unfortunately, active medical complicity in prison torture did not end with the Nazi era.4 While Australian doctors have so far not been directly implicated in prison torture practices,5 the inability (or unwillingness) of Australian prison doctors to recognise and promptly speak out on such incidents in the past has been unfortunate. Prison torture practices in which doctors are actively or passively involved diminish the standing of the medical profession, whose members are expected to be advocates for people at risk of torture. With a likely increase in the number of people imprisoned for terrorist activities in Australian prisons, medical workers need to be trained in the proper application of the Istanbul Protocol6 — a 1999 international guideline for the investigation and documentation of torture and its consequences — to enhance their skills in suspecting, documenting, and reporting prison torture incidents. It is also important that prison doctors are not placed in a “dual loyalty conflict” with regard to the treatment of terrorist suspects.4 Such risks may be minimised by administering prison health care through mainstream health departments, as well as by regular anti-torture training programs for frontline prison workers.

Niyi Awofeso

All stakeholders should contribute to enhancing Australia’s guidelines for ethical research Health and medical research involving human participants in Australia has been subject to guidelines promulgated by the National Health and Medical Research Council (NHMRC) since 1966. Currently, the key documents are the National statement on ethical conduct in research involving humans (1999)1 and the Joint NHMRC/AVCC statement and guidelines on research practice (1997).2 The former, better known as the “National Statement”, is endorsed by a number of peak national bodies, including the Australian Research Council (ARC) and the Australian Vice Chancellors’ Committee (AVCC). The “Joint Statement” is issued under the aegis of the NHMRC and the AVCC. The National Statement encompasses the ethical principles to be followed in proposing research involving humans, and advises institutions on the requirements for establishing human research ethics committees (HRECs). The Joint Statement provides guidance on good research practice, including details related to data collection, authorship and publication, supervision and mentoring and like matters, as well as providing the framework by which institutions should handle allegations of research misconduct. The system of oversight of human research based on these documents has been updated and modified from time to time and has served the nation reasonably well. However, the guidance provided in the documents has not been without its critics, and weaknesses in relation to the National Statement have been identified. These include under-resourcing of overworked HRECs,3 deficiencies in transparency and accountability of HRECs,3 absence of explicit application of the guidelines to the private sector,3 the failure of institutions and their HRECs to accommodate the vast increase in multicentre research4 and the “one size fits all” process of ethical review.5 The provisions of the Joint Statement for handling research misconduct allegations were severely tested and found wanting in a high profile case in 2004;6 furthermore, compared with Scandinavian countries,7 the education of new researchers in research ethics is patchy, especially outside our universities. As health and medical research has expanded in our teaching hospitals, there have been accusations that these institutions have not paid sufficient attention to the important task of research governance.8 In some instances, this has led to HRECs playing research governance roles for which they are neither equipped nor authorised — a development termed “mission creep”.9 The National Statement was extended by agreement to cover human research beyond the health and medical field, such as sociology, criminology and the humanities.1 However, this extension has led to criticisms of “ethics creep”; that is, the ethical review by HRECs of research of very low risk, thereby discouraging and frustrating some researchers and at the same time creating unnecessary work for HRECs.10 NHMRC guidelines are subject to regular review and any review includes obligatory public consultation. In addition, the Commonwealth National Health and Medical Research Council Act 1992 requires that the NHMRC, its principal committees and any working parties must “have regard” to any submissions received. Currently, both the National Statement and the Joint Statement are under active review by separate working parties of the NHMRC, the ARC and the AVCC. The two documents have already had an initial round of public consultation, and second draft revisions incorporating the responses to those consultations are now available for comment.11,12 Both documents contain important new sections. The necessity for institutions which support research to have solid policies and practices of good research governance (Box 1) is emphasised in both documents. For most institutions, this requirement should not have significant cost implications; rather, it will be a matter of more formally identifying and allocating existing responsibilities and reporting lines.8 The draft revised National Statement11 has been significantly modified. Researchers in fields beyond health and medical research should find it more responsive to their specific needs, and institutions should find it a more flexible document to use when deciding the level of independent review required for any research proposal. For health and medical researchers, interest will focus on several areas of new guidance, including risk in research and research with human stem cells, as well as extensively rewritten chapters such as those on data banks, clinical trials, genetics and tissue. Institutions and their HRECs should carefully consider the new final section on “Processes for research governance and ethical review”, which proposes significant alterations to matters including complaints handling, annual compliance reporting and monitoring of research. The draft revised Joint Statement, now to be known as the Australian code for the responsible conduct of research12 makes the roles and responsibilities of institutions and researchers much clearer. It calls for institutions to be much more active in providing education and induction of researchers in the realms of research ethics, research methods and research governance (Box 2). It spells out the conditions under which authorship of research publications is legitimate. It covers general principles for good research practices, data and records management, supervisory responsibilities, publication and dissemination of findings, peer review and conflicts of interest. Importantly, the new “Australian Code” presents a new look at dealing with research misconduct and fraud, including a proposed new framework for institutional responsibilities in handling allegations of research misconduct. This section was not available in the first round of public consultation, but incorporates material discussed at a stakeholder workshop on research misconduct held in Canberra in October 2005. It provides a more encompassing definition of research misconduct and calls for institutions to appoint “advisers on research integrity” as well as a senior “designated person” to take responsibility for the preliminary investigation of research misconduct allegations. For allegations of a serious nature, the inquiry established by an institution must be made up of people independent of the institution and must follow procedural fairness principles. We believe that these two draft documents herald a new era in the governance of research involving humans in Australia. At a time when commercial and other pressures on researchers may be increasing the risk of fraud and misconduct,13 it is crucial that our system for the oversight of research be sufficiently robust to protect participants and maintain community confidence in research. By emphasising the importance of research governance, reasserting the important roles that researchers and institutions have in the system of oversight, insisting on mechanisms for handling allegations of misconduct that are independent, prompt, fair and just, and making the processes of ethical review more responsive to the needs of different fields of research, the revised documents should be welcomed by all stakeholders. It is important that these stakeholders, including researchers, institutional leaders, sponsors of research, potential research participants, federal, state and territory governments and interested members of the community, consider and comment on the two draft documents. Input from as many stakeholders as possible in this second public consultation will enhance the guidelines and bring a greater sense of shared ownership. 1 Research governance Research governance is the framework by which institutions support, monitor and attest to the safety, ethical acceptability and quality of the research they undertake. Standards which underpin effective research governance exist in the domains of ethics and law, science, information protection, health and safety, intellectual property and commercialisation, financial management and public relations. For a more detailed discussion see reference.8 2 Education, training and induction* “To maintain a culture of responsible research conduct, it is important that institutions provide induction, formal training and continuing education for all research staff, including students and research trainees. Training should cover research methods, ethics, principles of confidentiality, data storage and records retention, as well as regulation and governance. Training should also include the institution’s policies and procedures regarding responsible research conduct, all aspects of this code, and the other sources of guidance that are available. Smaller institutions may make joint arrangements for induction and training with other institutions.” * Extracted from reference.12

Warwick P Anderson PhD · Christopher D Cordner PhD · Kerry J Breen MB BS, MD, FRACP

Public trust depends on promoting good practice and protecting the public from poor practice Traditional medical professionalism derives from medical practice in the late 18th and early 19th centuries. In the past 10 years, the search has been on in the United Kingdom — and in other countries — for a “new professionalism” more in harmony with patients’ expectations and the nature of medical practice today.1-5 Last month, the Royal College of Physicians of London affirmed its commitment to professionalism as the foundation of good quality medical practice through a Working Party report titled “Doctors in society: medical professionalism in a changing world”.6 That commitment is important, and has relevance beyond the UK. It comes at a time when some consider the very notion of “profession” and “professionalism” to be outmoded. The report and a supplement of excellent evidence7 (underpinning the report) is seen as the starting point for further development. The case for rethinking medical professionalism is presented with conviction and passion. Located in the social context and environment of today’s practice, medical professionalism is defined as a “set of values, behaviours, and relationships that underpin the trust the public has in doctors”.6 Medicine is described as a “vocation in which a doctor’s knowledge, clinical skills, and judgement are put in the service of protecting and restoring human well-being. This purpose is realised through a partnership between patient and doctor, one based on mutual respect, individual responsibility, and appropriate accountability”.6 In their everyday practice, doctors are committed to integrity, compassion, altruism, continuous improvement, excellence and partnership in health care teams. These values should form the basis for a new “moral contract” between the medical profession and society. Professionalism, the report argues, is as important as ever today because it codifies the idea that a doctor’s responsibilities go beyond a “mere” contract of employment. It advocates a concept that “recognises the complexity and uncertainties within clinical practice and which is based on an indissoluble partnership between patient and doctor in a radically new social context”.6 To this end, notions of knowledge, skills, science, practice, profession, society, service, commitment and integrity are retained. The report discards notions of “mastery”, “autonomy”, “privilege”, and “self-regulation” as out-dated or inappropriate. Competence, which describes “mere” capability, is replaced by excellence reflecting abilities of an “eminent” degree. The long tradition of the “art” of medicine yields to “judgement” as a characteristic more in tune with the application of clinical reasoning. Altruism and the idea of vocation are still there, but only just. And accountability is valued provided that it is “appropriate”, that it avoids creating a culture of suspicion and blame. All these ideas, some deeply controversial, will give doctors and the public much food for thought. So far so good. Then we come to the implications and 19 recommendations for implementation. These cover six areas: leadership, teams, education, appraisal, careers, and research. Professional bodies in the UK are urged to create a common forum that would speak on behalf of medicine with a unified voice. The proposals are sensible but lack bite. They are full of gentle, permissive words like “review”, “revise” and “consider”. Moreover, the report shies away from areas where tough decisions are needed if public trust in the institutions of the UK medical profession is to be restored.8 For example, it is tentative about the profession’s responsibility for defining the boundaries of medical practice and the standards, both the acceptable and the unacceptable, which it will expect individual doctors to observe consistently. In rejecting self-regulation — without discussion — it says nothing about the regulatory framework within which the profession and its professionalism must function. Revalidation, the most important recent development in medical regulation likely to improve patient safety if done thoroughly, is scarcely mentioned. Similarly, there is nothing about the role of rigorous peer review in quality assurance of doctors’ professionalism. This may be no accident. The authors say that they are attempting to usher in a major philosophical shift in attitudes to medical practice in the UK. They believe that the regulatory pendulum has swung too far towards a new, rule-based orthodoxy in which good standards of medical practice are a matter of rigorously enforced dutiful conduct. They seek to revert to a “more balanced position” where there is an understanding that an environment that encourages a doctor’s “goodness” is one that will promote positive patient outcomes. This is a false dichotomy. Modern professionalism is about both the encouragement and celebration of good practice and the protection of patients and the public from suboptimal practice. They are one of a piece — indivisible. Public trust is dependent on both. Achieving that will require some hard, creative thinking and courageous leadership by doctors’ organisations if professionalism, medical education and professional regulation are to put — and be seen to put — the interests of patients unequivocally first.8,9 The College has made a good start. However, fine words are no substitute for a track record of decisive action. The General Medical Council has had to learn that the hard way.10 Dame Janet Smith, who conducted the Shipman Inquiry,10 said to the Working Party that the public ought not even have to think about whether they trust their doctors — it should be something they are able to take completely for granted. Quite so. Everyone expects to have a good doctor.

Donald H Irvine CBE, MD, FRCGP

Individual values sometimes lead patients to make lifestyle choices that have negative effects on their health. Doctors tend to feel responsible for delivering best-practice health outcomes to such patients, but also feel inclined to respect their patients’ values. The adoption of a harm reduction model may provide a strategy for delivering the best care that is compatible with each patient’s chosen lifestyle.

Bradleigh D Hayhow BA(Hons), BM BS · Michael Peter Lowe BMed, FRACP

To the Editor: Last year was the 60th anniversary of the liberation of the Nazi concentration camps. We would like to draw your attention to an anatomy textbook, Atlas of topographical and applied human anatomy, authored by a Nazi physician, Eduard Pernkopf, and the alarming evidence which has emerged about the source of subjects used for the illustrations of this book. The context of raising this issue is that this text is listed as available for loan in a general collection on the catalogue of several university libraries around Australia, including the University of Sydney, the University of New South Wales, the University of Adelaide, the University of South Australia, La Trobe University, the University of Western Australia, the Queensland University of Technology and the University of Tasmania, often with multiple copies, which suggests that it may be held as teaching material. Evidence overwhelmingly suggests that the Pernkopf anatomical atlas contains pictures of victims of the Nazi regime. An investigation into this issue by the University of Vienna in the mid 1990s revealed that at least 1377 bodies of murdered victims, including children, were accepted by the Institute of Anatomy.1 The bodies of the victims were used, without the victims’ or their families’ consent, for research and teaching, including by Pernkopf for his atlas.1,2 Pernkopf, an enthusiastic Nazi, took over as Dean of the Vienna Medical School after the annexation of Austria by Nazi Germany, and led the expulsion of the then majority Jewish faculty, including several Nobel laureates.3 He is known to have willingly accepted specimens from murdered children and adults. Original editions, even as recently as 15 years ago, contained swastikas painted at the bottom of the pictures. These have been airbrushed out in more recent editions.4,5 Internationally, there have been a number of different approaches to managing this item within library collections. Some have asked their libraries to remove this book from their general collections. For example, a US physician, upon finding the book in his centre’s library, convinced them to expunge it from their collection. He also resigned from editorial responsibilities to the publisher of the atlas, and cancelled his subscriptions to their journals.1 Another approach has been placing a summary of the report from the University of Vienna’s investigation inside the front cover of the book, so that library patrons are given the context for the drawings and can make an informed choice.1 While acknowledging the need to preserve freedom of access to information, the unethical use of executed victims for this atlas leads us to believe that it has no place as a general anatomy text in an academic setting. The atlas may have a role as a reminder of the atrocities committed in the name of medical science during the Nazi era, and could remain available for researchers examining abuse of human rights, medical ethics and history. We have contacted our library (the University of Sydney library) about this atlas and asked them to take appropriate action. They have elected to move copies held in high usage collections to special collections. We urge others whose institutions hold this text to do the same.

C Raina MacIntyre · Catherine L King · David Isaacs

Alan Rodger Professor of Clinical Oncology, Beatson Oncology Centre, Western Infirmary, Dumbarton Road, Glasgow, G11 6NT, United Kingdom. alan.rodgerATnorthglasgow.scot.nhs.uk To the Editor: I note with concern that one of the authors of the article on aromatase inhibitors in early breast cancer (Nordman)1 declares under competing interests that she received an honorarium (in the form of financial support to attend a conference) “for writing this article” from a manufacturer of one of the current licensed aromatase inhibitors. It is reassuring to be informed that the company concerned had no role in the content of the article. However, is it wise and reasonable and, indeed, necessary for a medical oncology registrar to be financially rewarded by a pharmaceutical company for writing an article published in The Medical Journal of Australia about therapeutic products, one of which was developed and is now marketed by that company? Two other authors and reviewers and editorial staff were involved in this otherwise excellent article. I commend Nordman for her openness and declaration. However, I question the role of the pharmaceutical industry in rewarding medical authors in this way.

Alan Rodger

Glen Pater Director, Medical and Regulatory Affairs, AstraZeneca Australia, PO Box 131, North Ryde, NSW 1670. Glen. PaterATASTRAZENECA. COM In reply: In response to Rodger, AstraZeneca would like to reiterate that the company had no role in the content of the article published by Nordman and colleagues in the 4 July issue of The Medical Journal of Australia.1 AstraZeneca has provided Sydney Cancer Centre with an unrestricted educational grant. Along with Rodger, we commend the authors on their transparency about how this grant was applied.

Glen Pater

Ethical choices: case studies for medical practice. 2nd ed. Lois Snyder (editor). Philadelphia: American College of Physicians, 2005 (xvi + 188 pp). ISBN 1 930513 57 7. Ethics teaching is often theoretical, emphasising broad ethical principles, such as autonomy, or normative theories, such as consequentialism. Case studies are used primarily to illustrate these principles and theories. As a case-based text, Ethical choices: case studies for medical practice eschews the theoretical approach to medical ethics, arguing that ethics is “not just about philosophical and other principles, ideals and rigorous arguments, but about the very real aspects of what people do and why”. Through commentaries on 28 cases, divided into four sections (The clinical encounter, Non-clinical dimensions, Medicine’s collective obligations and The business of medicine), Ethical choices illustrates the resolution of a wide variety of dilemmas. Commentators do not argue by analogy with other cases — a finding consistent with the (potentially contestable) assertion that “ethical concerns are raised only when suggested courses of conduct deviate from the norm”. Instead, the emphasis is on the power of “stories” in ethics education, and on the importance of “using individual cases in all their complexity”. This does not mean that the suggested resolutions are complex; indeed, the majority of the commentaries follow a common pattern in which existing regulations and evidence are considered in light of broad ethical principles and duties, and the remaining uncertainty is navigated through relational, discursive and administrative processes. The implicit message seems to be that while principles and duties are useful for clarifying ethical dilemmas, it is processes, such as empathic doctor–patient or doctor–colleague conversations and development of institutional policies, that ultimately provide a resolution to ethical problems. The cases are realistic and topical (such as medical error or direct-to-consumer advertising) and the commentaries are clear, concise and multidisciplinary. Contributors include ethicists, clinicians, lawyers, administrators and public health practitioners. Many of the suggested procedures are refreshingly practical (for instance, the steps involved in negotiating end-of-life care) and conceptually interesting (such as the taxonomy of types of alternative medicine). There is a definite air of optimism in some of the suggested resolutions, implying that compassionate, contextually-sensitive communication procedures are certain to result in acquiescence, if not consensus. But processes do not always result in agreement and it is necessary at times to choose one principle over another, or to accept the necessity of making “tragic choices”. A brief introductory discussion of the theoretical underpinnings and potential drawbacks of relational and process-based ethics would thus be helpful. While the regulation discussed is specific to the United States, and some cases would need to be adapted for use in Australian medical schools, most of the cases are relevant to Australian practice. Those that are not directly relevant, such as the myriad difficulties associated with managed care, provide a timely warning of issues that may emerge locally. In its current US-specific form, Ethical choices would be most useful as a sourcebook for teachers but, if adapted to the Australian setting, could be used as a text for students and junior medical officers. Wendy L LipworthPhD candidate Centre for Values, Ethics and the Law in Medicine, University of Sydney, NSW

Wendy L Lipworth

Religious or spiritual values often influence health care decision-making by patients and their families, particularly in times of crisis. Though religious values might seem to be irrelevant where continuing treatment is judged to be “futile”, such clinical assessments should instead serve to open a dialogue about values and beliefs. The six major religious traditions in Australia have some similar values and principles about death and provision of care for the dying, but differ in their processes of ethical reasoning, cosmologies, and key moral concepts. Engaging with religious traditions on the common ground of basic values (such as human dignity, care, the sacredness of human life, non-violence, compassion, and selflessness) promotes negotiation of the manner in which care is provided, even where conflicts exist.

Rachel A Ankeny PhD · Christopher F C Jordens PhD · Ian H Kerridge MPhil, FRACP, FRCPA · Ross Clifford MA, MTh · Rod Benson BMin(Theol), MA

A radiologist presents examples of discourtesy between doctors and suggests a return to good manners and professionalism In 2004, I presented a poster of my musings on my professional experiences as a radiologist at the hands of medical colleagues. While I felt very strongly about its contents, I thought it would provide a little amusement among the scientific works at the meeting of the Royal Australian and New Zealand College of Radiologists. To my amazement, it struck a chord with many delegates — obviously, I was not alone in seething about discourtesy, which seemed rife, between professional colleagues. Most doctors (and their medical indemnity organisations) agree that patient rudeness and aggression are an increasing problem, and there is discussion on strategies to deal with these. Insufficiently debated is what I believe to be an increasing trend to discourtesy between referring clinicians and radiologists and between radiological colleagues. There are international and Australian codes of ethics regarding behaviour between colleagues.1-3 However, my literature search for references to practical day-to-day courtesy between colleagues revealed mainly concerns as to whether it was polite to bill fellow practitioners for services rendered!4 It would be easy to dismiss interprofessional rudeness as a facet of the decline in good manners in the general community. However, I consider that loss of courtesy between colleagues reduces directly the quality of patient care, and also the enjoyment of one’s working life. The complexities of modern medicine mean that no one doctor can be a “jack of all trades”. However, a lack of respect for the unique skills of another branch of medicine, and an unwillingness to admit some ignorance of these skills and to request advice, result in behaviour such as the following: An x-ray packet was returned to the radiologist with the terse instructions “RE-REPORT” pinned to the packet. In a telephone conversation to the radiologist who had reported a normal result on breast ultrasound examination, a general practitioner said “I ordered you to do an FNA [fine needle aspiration] and I expected it to be done. In future, when I order an FNA, it will be done.” After requesting a large number of examinations without consulting the radiologist, a country GP wrote: “Do not return patient to . . . until all tests ordered have been performed.” I sometimes feel that doctors have a desire to appear powerful in the eyes of patients. This may have resulted in the handwritten note from a GP, presented to me one morning (Box 1). Fear of litigation is always with us, and it is tempting to try to share the blame, but there is no excuse for the following outburst: A surgeon opened a telephone conversation to the radiologist with the words “I have told this patient to sue you to hell”. Colleagues are always going to make mistakes, and one day it is going to be you! One-upmanship is never helpful (Box 2). Short, friendly, personal letters or phone calls (even in this age of impersonal emails and text messages) are still the better way to point out a colleague’s error. Certainly, a fax received at the reception desk, and available for all to read, causes severe angst in the recipient (Box 3). And last, but not least, bullying in the playground or the workplace causes untold distress. Remember, you were a junior hospital doctor once! As a first step towards achieving a more pleasant work environment, the medical colleges should encourage debate on maintaining good manners and professionalism between their fellows. After that, it’s over to you and me! 1 Note from a general practitioner to a radiologist This note was presented by a patient when she arrived for an ultrasound examination 2 days before her scheduled appointment. 2 Report from a radiologist to a general practitioner This report was sent by a radiologist who investigated the patient and reviewed films taken at another radiological practice 2 years previously. 3 Fax from an endoscopist to a radiologist After the suggested endoscopy, the endoscopist faxed back the radiologist’s report with this handwritten comment.

Jane L Nuttall FRCR, FRANZCR

The golden rule is to treat your fellow medicos as you would wish to be treated When I was a medical student in the 1950s, we learned about medical etiquette, which our teachers then confused with medical ethics. There were rules governing the relationships between doctors, especially about “pinching” each other’s patients. And consultants were supposed to meet the patient and his or her general practitioner and give an opinion, not take over the patient. Being asked to treat a colleague, or a member of their family, was regarded as the ultimate professional accolade, and charging a fee was not an option. The same principles applied to nurses, medical students and clergy. Since then, the organisation of medical practice has become more complex. There are many more doctors and specialties. Doctors involved in the care of a patient may not know each other, or even understand each other’s main task or daily work. Some do not even trust each other. For example, recommendations in radiology and pathology reports for further, more expensive tests are in most cases sound medicine, but, in areas of medicolegal phobia or fierce competition, some GPs are sceptical of the underlying reasons. They forget that two minds are usually better for patient safety than one, and see themselves as the patient’s personal doctor who knows what is good for that patient. Radiologists and pathologists are regarded as part of a service industry. They should provide what they are asked for, neither more nor less. The combination of personal distance resulting from relative anonymity together with authoritarian personality traits is the probable underlying psychopathology behind the crass examples cited by Nuttall in this issue of the Journal1 . Anonymity is also a major reason for the vast difference in courtesy between hospital discharge letters written by registrars and those from consultants in private practice. My pet hate is the registrar who replies to my detailed letter for admission, addressing me as “The LMO” (local medical officer). Medicare also changed the courtesies doctors displayed to each other. One reason for using it was that it was “free”, and the other was the convenience for the doctor-patient in not feeling obliged to say “thank you” with an expensive present. Doctors also became more militant about being paid their due worth. Even medical students were charged full fees, and this has spelt the death knell for the Hippocratic rules governing lifelong obligations between teachers and learners. Medical students also absorb many of their future attitudes and behaviours from their teachers. Medical craft groups tend to judge other doctors according to their own standards. This results in “bad-mouthing” of other doctors, which is one of the more unedifying features of modern medicine.2 Even specialist writers of problem-based learning modules subconsciously tend to begin their scenarios with a patient “stuffed up” by a GP and rescued at the 11th hour by the clever consultant at the “Royal Excellent Hospital”.3 The golden rule of medical relationships is to treat your fellow medicos as you would want to be treated. This would be more likely if doctors of all persuasions were to meet more often and learn something of each other’s views and daily tasks. Members of the medical profession are a team fighting a battle against mental and physical disease and disorder. Courtesy comes from the habit of giving credit and thanking others for their contribution to the wellbeing of a patient. I was particularly moved by a letter to a journal from an orthopaedic surgeon who remarked that, after having performed 1200 hip arthroplasties, he had received his first letter of feedback from a GP, informing him that the operation had revolutionised the life of a patient.4 My fantasy would be to dine out once a year with each of the doctors and their support staff who have contributed to the management of my patients. The Federal Treasurer could contribute to the quality of patient care and the reduction of medicolegal cases by making such events tax deductible.

Max Kamien MD, FRACP, FRACGP, FACRRM

Community debate about confidential health care for adolescents was triggered recently by the federal government’s proposal to allow parents of teenagers aged 16 years and under access to their children’s Health Insurance Commission data without their consent. Extensive research evidence highlights the importance of confidentiality in promoting young people’s access to health care, particularly for sensitive issues such as mental and sexual health, and substance use. Involving parents is important, but evidence for any benefit from mandatory parental involvement is lacking. The law recognises the rights of mature minors to make decisions about their medical treatment and to receive confidential health care; however, the doctor must weigh up certain factors to assess maturity and ensure that confidentiality around such treatment will be in the young person’s best interests. Evaluation of maturity must take into account characteristics of the young person, gravity of the proposed treatment, family factors, and statutory restrictions.

Lena A Sanci MB BS, PhD, FRACGP · Susan M Sawyer MB BS, MD, FRACP · Dagmar M Haller MD, FMHGen Med(Switz) · George C Patton MB BS, MD, FRANZCP · Melissa S-L Kang MB BS, MCH

Dagmar M Haller,* Lena A Sanci,† George C Patton,‡ Susan M Sawyer§ * General Practitioner and PhD Candidate, ‡VicHealth Professor and Director of Adolescent Health Research, §Professor of Adolescent Health, and Director, Centre for Adolescent Health, Murdoch Children's Research Institute and The University of Melbourne, 2 Gatehouse Street, Parkville, VIC 3052. †Senior Lecturer, Department of General Practice, The University of Melbourne, Melbourne, VIC. dagmar.hallerATmcri.edu.au To the Editor: We recently advocated the inclusion of a mature-minor clause in the National Health and Medical Research Council ethics guidelines on teenagers’ participation in research.1 This would allow minors (teenagers younger than 18 years) who show sufficient maturity and understanding to consent to participation in minimal risk research (eg, observational studies and quality assurance studies) without requiring parental consent. This is important in primary care research, as teenagers presenting to general practitioners without an accompanying parent or carer frequently wish their visit to remain confidential. To exclude this group from research would deny them the benefit of potential improvements to their health care as a result of research. As no such data were available in Australia, we sought to document, as part of a larger primary care study of young people’s perspectives on their health problems and their expectations from a GP consultation, the proportion of teenagers aged 16 to 18 years who potentially would not be able to participate because they presented without a parent. We also documented whether, when present, parents would express concern about not being asked to provide consent for their teenaged child to participate. We recruited up to 20 consecutive patients aged 16 to 24 years in each of 26 randomly selected practices throughout Victoria and invited them to participate in an interview on their perspectives on the health problem for which they had come to see the doctor and their expectations from the consultation. Our institutional ethics committee approved inclusion of minors aged 16 to 18 years without parental consent. One of the authors, a GP (D H), obtained consent from participants and conducted the interviews. Results are reported with 95% confidence intervals adjusted for clustering within practices. Of the 501 young people approached, 101 were minors. Five minors (5%; 95% CI, 0.6%–9%) were excluded (too unwell, intellectually disabled or non-English speaking), and another five (5%; 95% CI, 1%–8%) declined participation. Of the 91 minors who consented to participation, 40 (44%; 95% CI, 35%–53%) had come without a parent. Although 37 of the parents of the 51 minors who were accompanied (73%; 95% CI, 59%–86%) went into the GP consulting room with their children, only one was concerned about her child consenting and participating in an interview on his own. Had parental consent been mandatory, nearly half the patients aged 16 to 18 years could not have been included in this primary care study. When present, the overwhelming majority of parents did not disapprove of their children consenting and participating on their own. These findings support the idea that, for low-risk studies in primary care, mature minors should be given the opportunity to consent to participation on their own.

Dagmar M Haller · Lena A Sanci · George C Patton · Susan M Sawyer

Medical termination of pregnancy with mifepristone, a progesterone antagonist, is available to women in North America, the United Kingdom, much of Western Europe, Russia, China, Israel, New Zealand, Turkey and Tunisia, but not Australia. Experience of mifepristone use in around two million abortions has shown that it is safe, effective, cheap to produce, and highly acceptable to women. Mifepristone is usually used in combination with a prostaglandin analogue, such as misoprostol; these drugs have been added to the World Health Organization’s list of essential medicines for developing countries. Availability of this drug in Australia might largely overcome many of the inequities of access to abortion, and is critical for many women in rural areas and women in some ethnic groups whose access to surgical abortion is limited.

Caroline M De Costa FRANZCOG, FRCOG

CorrectionRe: “The Messiha and Schiavo cases: third-party ethical interventions in futile care disputes”, by Thomas A Faunce and Cameron Stewart, in the 5 September issue of the Journal (MJA 2005; 183: 261-263). Two words were omitted from the title. The title should read “The Messiha and Schiavo cases: third-party ethical and legal interventions in futile care disputes”. The html and pdf versions of the article were corrected on 8 September 2005.

Thomas A Faunce · Cameron Stewart

Privacy regulation in Australia, whether by federal or state legislation or other means, has provoked complaints from researchers. Its scope depends on defining the information it covers, the organisations it governs and the principles it applies. Regulation is inconsistent, and compliance can be complex (as illustrated by a hypothetical research example). National reform to achieve a realistic, balanced, publicly acceptable and consistent regulation is urgently needed, and has been recognised and recommended by recent reviews of the Commonwealth Privacy Act 1988 (Cwlth) by the Office of the Federal Privacy Commissioner and the Australian Senate.

Colin J H Thomson BA, LLB, LLM

New legislation passed in Victoria (the Serious Sex Offenders Monitoring Act 2005) extends the role of doctors in managing and treating sex offenders. This legislation is not based on a solid understanding of the research evidence on treatment of sex offenders or on their risk of reoffending. The legislation creates ethical and professional dilemmas for health professionals through the conflation of legal control of offenders with the medical management of disorders of sexual preference. There is a critical need for research and funding in this area, rather than ever more oppressive laws, if governments are to be serious about treating sex offenders, rather than simply incarcerating them.

Danny H Sullivan MHlthMedLaw, FRANZCP · Paul E Mullen DSc, FRANZCP · Michele T Pathé MD, FRANZCP

Preeti Sachdev,* Simon Chapman† * Postgraduate Honours Student, † Professor, School of Public Health, University of Sydney, NSW 2006. simonchapmanAThealth.usyd.edu.au To the Editor: Smokeless tobacco products (with the possible exception of Swedish “snus”1) are carcinogenic.2 They cause oral cancer, sometimes rapidly (within 7 years of use).3 A pinch of smokeless tobacco held in the mouth for 30 minutes delivers as much nicotine as 3–4 cigarettes.4 Sachet of smokeless tobacco In Australia, the sale of smokeless tobacco was first banned in 1986, in South Australia.5 Thereafter, all states enacted legislation outlawing its sale, and, in 1991, an amendment to the federal Trade Practices Act 1974 banned the manufacture, importation and commercial supply of the products.6 Nevertheless, permits to import smokeless tobacco for personal use were issued on application, and, in March 2002, an amendment to the federal Customs (Prohibited Imports) Regulations 1956 allowed importation without a permit of amounts up to 1.5 kg for personal use.7 Between September 2000 and March 2002 (when permits were still required for all importations), 2270 permits were issued, while between March 2002 and December 2004, a further 88 permits were issued for amounts exceeding 1.5 kg (Mr Tim Pulford, Australian Competition and Consumer Commission, Canberra [which administers permits], personal communication). Following observations of smokeless tobacco being sold in south Asian shops in Sydney, New South Wales, we sought to assess its availability. We selected 14 Sydney suburbs with large populations of residents from south Asia (defined as the Indian subcontinent), and surveyed all south Asian mixed businesses in the shopping precincts of these suburbs in March 2005. If no smokeless tobacco products were displayed, the person serving was asked if they had any “paan masala or guthka” (Hindi expressions for smokeless tobacco) for sale. Fifty of the 53 shops surveyed (94%) sold smokeless tobacco: 31 (62%) of these kept it under the counter, 14 (28%) on display behind the counter, and five (10%) on shelves accessible to consumers. No shopkeeper advised that sale of the products was illegal. The prevalence of “under the counter” storage suggests widespread awareness that it is illegal to sell the products. The federal Customs (Prohibited Imports) Regulations do not restrict the number of times a person may import up to 1.5 kg of smokeless tobacco for personal use without a permit. A typical sachet of guthka (Box) weighs 4.6 g, meaning that around 320 sachets could be legally imported for personal use. It would be entirely legal for a shopkeeper and each family member to import up to 1.5 kg on a daily basis if it was intended for personal use. Diversion of this into retail trade appears easy. The ease with which we were able to obtain smokeless tobacco suggests that the law prohibiting sale is not being enforced. The New South Wales Public Health Act 1991 empowers officers, such as environmental health officers, to investigate breaches of the Act. These officers should undertake surveillance of the readily identifiable shops in the manner that we did, confiscate the products being sold and warn that future sales will result in prosecution.

Preeti Sachdev · Simon Chapman

We need to acknowledge the inevitability of death to have some choice in the manner of our dying The tragic story of Maria Korp, the Victorian woman with severe irreversible hypoxic brain damage after an alleged murder attempt, has been prominent in the Australian media over the past few weeks. The clear, considered, and humane intervention by the state’s Public Advocate to authorise the cessation of artificial feeding has drawn both widespread praise, and some condemnation, especially from right-to-life activists.1 Once again, care and decision-making at the end of life is in the public arena. Earlier this year, world media attention focused on a young American woman, Theresa Marie Schiavo, who had been in a permanent vegetative state for more than 15 years. A prolonged legal and political battle in state and federal jurisdictions of the United States eventually led to the cessation of tube feeding, and her death. Interestingly, there was broad agreement between the courts and medical opinion that feeding should stop.2 In the preceding November, a much less publicised case was played out in Australia. The Supreme Court of New South Wales ruled that treatment could be withdrawn from Isaac Messiha, a man whose life was supported by ventilation and tube feeding, after he had experienced severe cortical brain damage resulting from a cardiac arrest. Faunce and Stewart review the Messiha and Schiavo cases concerning treatment abatement (a term adopted by Weir3 to encompass both stopping and not starting treatment) for incompetent persons (page 261) and weigh up two options for dispute resolution: an institutional clinical ethics committee ruling, and a judicial declaration on futility.4 Although both may occasionally have their place, basic process questions need to be posed by clinicians5 (Box 1) before recourse to external arbitration. It is noteworthy that in neither case was an advance directive in place. An important difference between the two cases lies in the time that elapsed after catastrophic hypoxic brain injury before treatment abatement was considered — years for Theresa Schiavo, and initially only 4 days for Isaac Messiha. It is clearly essential that abatement decisions should not be made prematurely. They should only be made after the patient’s failure to improve has been demonstrated over a period of observation and care that is widely agreed (by appropriate specialist neurological opinion, and supported by any relevant clinical evidence) to be reasonable for the diagnostic category concerned (stroke, post-coma unresponsive state, or brain death). Patients in a post-coma unresponsive state (previously known as permanent or persistent vegetative state) constitute a small subset of those who are incompetent to make medical decisions for themselves, and can be further subdivided into those whose condition is the end-stage of a terminal (albeit slowly progressive) illness (for example, the Victorian BWV case6), and those who are the victim of anoxic insult or trauma and are being maintained by nutritional support indefinitely, as in the Messiha and Schiavo cases, and the United Kingdom case of Anthony Bland.7 Leaving questions of advance directives to one side (their uptake rate has been poor nearly everywhere), Australian health legislation is not obviously helpful with the Bland-type cases, whereas some headway has been made with the first subset, as seen in the BWV case, and the drafting of the Consent to Medical Treatment and Palliative Care Act 1995 (SA). Whether the underlying condition is progressive or static, nobody should be locked indefinitely into an existence on life support, often without consent, and usually with no prospect of recovery. Treatment abatement decisions for those who are unable to speak for themselves should usually be resolved where they traditionally have been, between clinicians and families or duly appointed agents. Recourse to public tribunals and courts should be minimised, reserved for situations of intractable disagreement, if only because such processes address, but can also encourage, adversarial style mediation. Reducing the amount of futile medical treatment and introducing the timely deployment of appropriate palliative care to all who need it should be our preferred process. In bioethics, the concept of “futile” treatment has had a rough ride, mainly because of the inevitable uncertainties of medical prognostication. However, the “prognostic paralysis” described by Murray and colleagues is a real challenge,8 and we cannot ignore the fact that medicine has its limits. Despite polls reporting a widespread public pragmatism about death and dying (“I would never want to be a vegetable”, “When my time comes I do not want to be kept alive artificially”), when clinicians do try to discuss treatment abatement with patients and families, they often meet disbelief, even hostility. Clearly, polls reflect public attitudes as distinct from personal situations. In personal health care encounters, the idea that cure is improbable or impossible, or that continued life support is inappropriate or unkind, is unacceptable to many families. The wider problem here is that acknowledgement of the inevitability of death, and preparation for it, have largely lost their place in our culture. For many, an almost child-like faith in medicine and science has taken its place. We need to take up the challenges, and solutions, offered by health-promoting palliative care (Box 2).9,10 We need to shift from seeing the treatment of dying people, and the maintenance of those who are permanently unconscious but biologically alive, as “curative”. Instead, treatment of dying people with curative intent should be seen as an inappropriate and unkind obstruction of the natural dying process (given that our natural biological inheritance is to die) and a misuse of medicine.11 Thus, we should first try to save the lives of those who are sick and injured, but when this is no longer a reasonable prospect, the goals of care need to reflect that reality (Box 3).12 Mere emphasis on individual choice, important as it is, is not enough. A wider social understanding about the anticipated results of treatment of the dying and comatose person is essential, not medical heroics or legal and moral gymnastics. Health care workers and society need to move beyond curative domination and a view of death as medical defeat or failure. We need to question the place of death in the culture and processes of hospitals and aged care facilities, where most of these treatment abatement decisions occur. Appropriate care and decision-making at the end of life can only occur when death and the dying process are acknowledged, worked with, and regarded as an integral part of modern health care. Research into policy-based approaches, such as advance directives13 and care pathways for the dying in hospitals,14 is important. Results of their evaluation in Australia are eagerly awaited. In the meantime, many hospitals in Australia still do not have adequate consultative palliative care resources. When in place, and adequately funded, they can assist with imparting bad news, adapting to impending death, providing holistic care for patient and family, and with the transition, where appropriate, to community-based palliative care, or a palliative care bed. Evidence concerning good practice in communication about these issues is now well established.15,16 Death and dying is everyone’s business. Good clinical practice, integrating all we have learnt about communication and support for patients and families facing death, will go a long way to easing these tough journeys. But clinical approaches are not enough. We need to work with the policy-makers to place death and loss back on the public health and community agenda. We cannot control the fact of death, but we can have some influence on the manner of our dying. Medicine can make a wonderful contribution to quality of life until death; and it can make it miserable. This choice is ours. 1 Key questions to be addressed by a health care team if treatment abatement is considered Are the clinical facts of the case well established? Is the diagnosis correct? Has sufficient time elapsed to be reasonably confident that there is no reasonable prospect of substantial improvement or recovery? Is there consensus among the clinicians about the diagnosis, prognosis and most appropriate course of medical action? Is a case conference necessary? Identify the key decision maker(s) in the family, or friends. Have the patient’s family, carer(s) or legally appointed agent been advised of the above? Have they had a chance to express their opinions, and been involved in the decision-making process? Has the patient’s general practitioner been involved? Has the abatement decision been documented? The plan for implementing it may involve a “time trial” of continued life-sustaining treatment. How will subsequent objections to the decision be dealt with? Has a consultative palliative care team referral been considered? 2 Goals of health-promoting palliative care Provide education and information for health, dying and death Provide both personal and social supports Encourage interpersonal reorientation towards a “natural” death Encourage reorientation of palliative care services towards public health ideas of prevention, harm-reduction and community participation Combat death-denying health policies and attitudes 3 Goals of care Curative (“beating it”) Cure or durable remission Prognosis: years Palliative (“living with disease, anticipating death”) Disease incurable and progressive Prognosis: weeks, months (but can be years) Terminal (“dying very soon”) Death imminent Prognosis: hours or days Modified from Ashby and Stoffell.12

Michael A Ashby MD, FRACP · Allan Kellehear BA, PhD · Brian F Stoffell PhD

Relatives may increasingly demand that an incompetent patient’s treatment be continued indefinitely, despite clinical advice that it is technically “futile” (offering no reasonable prospect of return to a meaningful quality of life). Third-party interventions may become a more frequent part of attempts to resolve such disputes where there is no formal advance directive. In the Messiha case, the Supreme Court of New South Wales upheld clinical judgement regarding the patient’s best interests as most important. In the Schiavo case in the United States, clinicians’ decisions on futility of treatment had received unwavering judicial support in more than 20 proceedings. Political differences between the US and Australia make it unlikely clinicians in this country will face Schiavo-type legislative challenges to individual clinical decisions and the judicial rulings upholding them. Consulting a clinical ethics committee in such scenarios is both legally recommended and clinically warranted as an important device for diffusing tensions between relatives and clinicians, as well as clarifying their respective ethical and legal responsibilities. In protracted or apparently irresolvable disputes with relatives, applying for a judicial declaration on futility of treatment has become a practical option for intensivists in Australia and should be a recognised part of their training.

Thomas A Faunce LLB(Hons), BMed, PhD · Cameron Stewart BEc, LLB(Hons), PhD

Medical ethics manual. John R Williams. Ferney-Voltaire, France: World Medical Association, 2005 (134 pp, no charge, free download available at www.wma.net). ISBN 92 990028 1 9. The World Medical Association (WMA) has been active in promoting ethical standards in medicine for over 50 years, with notable publications including the Declarations of Geneva and Helsinki. With the Medical ethics manual, the WMA turns its attention to the practical ethical issues facing medical students and physicians. Despite its brevity, the Manual presents a fair introduction to medical ethics together with an argument for its inclusion in medical education. Three core values of compassion, competence and autonomy are identified in the first chapter, reflecting a general shift away from the “four principles” approach in medical ethics. Interestingly, the value of “autonomy” described here refers to both physician and patient autonomy. The three central chapters describe physicians’ relationships with patients, society and colleagues, respectively. The chapter on patients contains standard medical ethics fare: confidentiality, informed consent, incompetent patients, and issues at the beginning and end of life. Euthanasia and assisted suicide are condemned as unethical, while abortion is left to “individual conviction and conscience”. The chapters on society and colleagues discuss a range of issues including resource allocation, public and global health and the evolving role of doctors in the health care team. The international orientation of the WMA is reflected in sections on human rights, professional duties (such as avoiding participation in torture), and the need for countries to educate their own doctors rather than securing them from less advantaged places. Research ethics are covered in a brief but comprehensive discussion. Each chapter begins with a set of objectives. These are overly ambitious at times (for example, “deal with the ethical issues involved in allocating scarce medical resources”), but will be helpful for teaching, as will the case studies. The appendices contain a somewhat idiosyncratic glossary as well as various resources. The listed Internet resources are disappointing and do not reflect the nature and scope of current web offerings. I enjoyed reading the Manual; this attractively presented, pocket-sized text is a useful introduction to ethics for students. The emphases upon relationships, public health and the global context are particularly welcome. Wendy A RogersAssociate Professor of Medical Ethics and Health Law Flinders University, Adelaide, SA

Wendy A Rogers

To the Editor: One of the great privileges in practising obstetric medicine is to support a couple through a successful confinement when they have previously been advised against attempting pregnancy because of pre-existing maternal disease. However, in some cases, pregnancy carries a substantial risk of morbidity and mortality to both the mother and infant. Indeed, many maternal deaths in Australia are still preventable,1 and underlying cardiac disease is an important cause.2 Recently, I was consulted for preconception counselling by a young woman with dilated cardiomyopathy. Based on the limited evidence in the literature, her risk of dying as a result of pregnancy would be greater than 25%.3 Similarly, I was recently involved in the care of a young woman with Eisenmenger syndrome who elected to terminate her pregnancy due to the 50% mortality associated with pregnancy with this condition.4 Pregnancy in young women with moderate renal failure carries a significant risk of permanent decline in renal function, along with a high risk of intrauterine growth retardation and prematurity for the baby.5 Organ transplantation offers the best hope for women in this situation, as pregnancy outcomes are excellent after solid organ transplantation (with the exception of lung transplantation). However, many women have organ dysfunction severe enough to compromise pregnancy outcome, but not to warrant transplantation.6 Pregnancy in the presence of maternal disease may also pose a substantial cost to the community. A 2001 study in the United Kingdom estimated the mean cost of pregnancy care for five mothers with severe cardiac disease to be £23 000, not including the cost of neonatal care.7 One mother and one baby died. Options for couples with pre-existing maternal disease are limited. In Queensland, they are excluded from adopting a child because they are not infertile and because of the mother’s medical condition. Altruistic surrogacy would allow them to have a child that is genetically their own without risking the mother’s and infant’s health. However, legislation on surrogacy varies significantly between Australian jurisdictions (Box),8 and, in Queensland, all surrogacy arrangements — both commercial and altruistic — are illegal. Thus, my patient with dilated cardiomyopathy faces prosecution if she were to attempt surrogacy anywhere in Australia while a Queensland resident, whereas it would be freely available to her if she moved 80 km south and became a New South Wales resident. I believe altruistic surrogacy should be available for women in whom underlying medical conditions result in a significant risk of morbidity or mortality associated with pregnancy. Legislation on surrogacy arrangements in Australia* Queensland: The Surrogate Parenthood Act 1988 (Qld) makes all arrangements relating to surrogacy illegal in Queensland, imposing criminal penalties on all parties involved in both altruistic and commercial surrogacy arrangements. Tasmania: The Surrogacy Contracts Act 1993 (Tas) makes it an offence to make or receive a payment or to publish any advertisement in relation to a surrogacy contract. All surrogacy contracts are void and unenforceable. South Australia: The Family Relationships Act 1975 (SA) makes it an offence to enter into a surrogacy contract for valuable consideration, and contracts are illegal and void. Australian Capital Territory: The Parentage Act 2004 (ACT) does not prohibit non-commercial surrogacy, provided no advertising or intermediaries are involved, and payments to cover expenses are allowed. Victoria: The Infertility Treatment Act 1995 (Vic) prohibits commercial surrogacy, and has complex criteria regarding eligibility of surrogate mothers. * New South Wales, Western Australia and the Northern Territory do not have surrogacy legislation.

Adam P Morton

Comment: Morton feels that women for whom pregnancy poses a substantial risk should be offered altruistic surrogacy, so that they can still have a child that is genetically their own. The suggestion is commendable but opens a hornets’ nest. First, “genetic ownership” is a bit of a fiction at best, given that the only item genetically owned by the mother is an egg with 23 chromosomes and some cytoplasm. Admittedly, Morton refers to couples rather than to women, but few are the men who have incontrovertible evidence of any genetic stake in their alleged offspring,1 and, given the rate with which partnerships change, thousands willingly care for children in whom they know they have no genetic stake at all. After implantation of the fertilised embryo, the carrier of the pregnancy owns whatever there is to be owned, irrespective of where some of the genes came from. At birth, genetic ownership changes again, and the child becomes its own “genetic owner”. So, how much “genetic ownership” of a child can there be? Second, who would qualify for altruistic surrogacy? It seems reasonable that women with Eisenmenger syndrome should not embark on a pregnancy given the high mortality associated with it. But how do we know that collecting ova and all it entails, and the subsequent years caring for a baby/toddler/child/teenager, would not be an even greater challenge to the woman’s health than pregnancy? Third, where will these surrogates come from (especially for women without sisters or other suitable family volunteers), and how do we ensure that they will be happy to hand back the child to its “genetic owners”? How will we protect these altruistic women in subsequent years against potential law suits for alleged failures in duty of care to the child that they carried (for example, by exposure to toxins during the pregnancy)? Fourth, is there not a far easier and more logical solution to this problem, provided that egg collection does not endanger the woman’s health? Why not preserve the woman and her partner’s frozen embryos until the woman’s medical condition is sufficiently stable to both sustain a pregnancy and care for the child that hopefully results from it? If the woman’s health cannot be restored sufficiently to achieve this, these couples could then show some altruism of their own by donating the embryos to infertile couples who desperately want a child irrespective of whether they can claim “genetic ownership”. Thus far, there is little evidence that altruistic donation and genetic ownership are even half way to meeting each other.2 However, Morton should be commended for drawing attention to a national problem in women’s health. The disparities and discrepancies between the Australian states and territories in almost anything that relates to reproduction2-5 is an utter disgrace. Reproductive health should be equitable among all Australians.

Marc J N C Keirse