John Terence Harris

Michael Rawlins and Andrew Dillon start their defence of Nice in fine polemical style, unfortunately polemics is all they have to offer. They totally fail to justify the Nice proposals on dementia treatments nor do they make any more plausible than formerly their use of the notorious QALY. They say:"Harris’s recent editorial, It’s not NICE to discriminate, is long on both polemic and invective – but short on scholarship. He offers nothing to illuminate the debate about allocating healthcare in circumstances of finite resources; he has no understanding of the quality adjusted life year and its use in health economic evaluation; and he makes ill-researched, unsubstantiated and offensive charges against the Institute and its advisory bodies."Accusations are easy to make, difficult to substantiate. There are a number of claims here, only one of which is true. It is true that my editorial was robust, polemical if you like, but editorials are not the same as research papers and these are important issues which deeply affect real lives. Although Rawlins and Dillon affect to take the high ground their own article contains even more vigorous and much more personal invective than my editorial, I make no complaints. But as to the rest of what they say, well, let’s just see!They claim I offer nothing to illuminate resource allocation and that I have no understanding of the QALY. Both of these claims may well be true, but nothing they say goes any way to support these claims or even towards making them plausible. I have studied and written about the QALY for almost 20 years1,2,3,4,5,6,7,8,9,10,11,12,13,14,15 and Rawlins and Dillon show no evidence of any awareness or indeed any understanding of the issues, whether …

NICE must not say people are not worth treatingThe National Institute for Health and Clinical Excellence has proposed that drugs for the treatment of dementia be banned to National Health Service patients on the grounds that their cost is too high and “outside the range of cost effectiveness that might be considered appropriate for the NHS”i.1This is despite NICE’s admission that these drugs are effective in the treatment of Alzheimer’s disease and despite NICE having approved even more expensive treatments. The effect is that thousands of Alzheimer’s patients will be denied the only treatment available. It is difficult to think of this as anything but wickedness or folly or more likely both. At the same time, and with no apparent sense of irony, NICE has launched a public consultation document3 on its guidelines on social value judgments. As we shall see these guidelines are ethically illiterate as well as socially divisive.Assuming permanently scarce resources it is clearly crucial that such healthcare resources as are available are not wasted. This point is often made in terms of cost effectiveness and it is argued, not implausibly, that to talk of cost effectiveness implies that we are able to measure just how cost effective each treatment is. To do so of course we need a standard of measurement. NICE has adopted the ubiquitous, but justly infamous QALY, the Quality Adjusted Life Year.The QALY combines life expectancy after treatment with measures of the expected quality of that life. There are two ways in which QALYS can be used. They might be used to determine which of rival therapies to give to a particular patient or which procedure to use to treat a particular condition, in short which of two different treatments is the more …

This paper argues that the HFEA’s recent report on sex selection abdicates its responsibility to give its own authentic advice on the matters within its remit, that it accepts arguments and conclusions that are implausible on the face of it and where they depend on empirical claims, produces no empirical evidence whatsoever, but relies on reckless speculation as to what the “facts” are likely to be. Finally, having committed itself to what I call the “democratic presumption”, that human freedom will not be constrained unless very good and powerful reasons can be produced to justify such infringement of liberty, the HFEA simply reformulates the democratic presumption as saying the opposite—namely that freedom may only be exercised if powerful justifications are produced for any exercise of liberty

Ted Shotter's founding of the London Medical Group 50 years ago in 1963 had several far reaching implications for medical ethics, as other papers in this issue indicate. Most significant for the joint authors of this short paper was his founding of the quarterly Journal of Medical Ethics in 1975, with Alastair Campbell as its first editor-in-chief. In 1980 Raanan Gillon began his 20-year editorship. Gillon was succeeded in 2001 by Julian Savulescu, followed by John Harris and Soren Holm in 2004, with Julian Savulescu starting his second and current term in 2011. In 2000 an additional special edition of the JME, Medical Humanities, was published, under the founding joint editorship of Martyn Evans and David Greaves. In 2003 Jane Macnaughton succeeded David Greaves as joint editor. Deborah Kirklin, under whose auspices MH became an independent journal, took over in 2008, and she was succeeded in 2013 by Sue Eckstein. This short paper offers reminiscences and reflections from the two journals’ various editors.From the start the JME was committed to clearly expressed reasoned discussion of ethical issues arising from or related to medical practice and research. In particular, both Edward Shotter and Alastair Campbell, each a cleric, were at pains to make clear that the JME was not a religious journal and that it had no sort of partisan axe to grind.Campbell's appointment as founding editor was something of a surprise, as the original intention had been to appoint a medical doctor, who could be expected to know medical practice from the inside. However, in 1972 Campbell, a Joint Secretary of the Edinburgh Medical Group, had published Moral dilemmas in medicine. …

Opponents of destructive embryo research, such as embryo rightists, as well as proponents accept that natural reproduction is permissible. There is an alternative to natural reproduction—to remain childless. John Harris began this series of articles by asking, what does a commitment to the permissibility of natural reproduction entail? Harris has argued that a commitment to the permissibility of natural reproduction entails a commitment to the permissibility of destructive embryo research. Julian Savulescu has denied this. However, there are significant areas in which our views have converged

The principle that each individual is entitled to an equal opportunity to benefit from any public health care system, and that this entitlement is proportionate neither to the size of their chance of benefitting, nor to the quality of the benefit, nor to the length of lifetime remaining in which that benefit may be enjoyed, runs counter to most current thinking about the allocation of resources for health care. It is my contention that any system of prioritisation of the resources available for healthcare or of rationing such resources must be governed by this principle. This can have apparently paradoxical conclusions in that it can seem wasteful to give someone with a very slim chance of a lifesaving treatment the same priority as someone with a much better chance. In an important and thoughtful recent paper, Julian Savulescu has concentrated on this apparent weakness and has argued for a particular conception of the good or benefit to be achieved by a healthcare system which purports to demonstrate the inadequacies of an equal opportunities approach to prioritisation and to replace it with an altogether better account. This paper will show that a rational ‘reasons based consequentialism’ is more in line with the equal opportunities approach, which I defended some time ago in these pages, than with that of Savulescu. I shall then examine more closely the conception of equal opportunities in health care and show that if we give weight to an individual's reasons, and what is expected to be good for them, we will opt for exactly the equality based account of distributive justice that I have recommended.

ABSTRACT This paper restates some of the principal arguments against an automatic preference for the young as advocated by Kappel and Sandøe, arguments many of which have been extant for over a decade but which Kappel and Sandøe largely ignore. It then goes on to demonstrate that Kappel and Sandøe's “indifference test” fails to do the work required of it because it can be met by unacceptable conceptions of justice. The paper develops a number of new arguments against what I have called “ageist” preferences for the young or for those with long life expectancy. Finally I show that Kappel and Sandøe must believe that murdering older people is less morally wrong than murdering the young and that people relying on arguments such as theirs will have to accept the moral respectability of killing the innocent in order to maximise units of lifetime.

Fast-moving and ever-changing, stem cell science and research presents ongoing ethical and legal challenges in many countries. Each development and innovation throws up new challenges. This is the case even where new developments initially seem to solve old dilemmas. Sometimes it becomes evident that new science does not in fact solve old problems and, for that reason, the ethical issues remain. In recognition of this, this book presents innovative and creative analyses of a range of ethical and legal challenges raised by stem cell research and its potential and actual application. The editors of this collection have brought together experts from ethics and law to bring fresh perspectives on the use of and research on stem cells. The chapters in this collection range across a number of different issues in the debate on stem cells, from the ethical dilemmas of conducting stem cell research to those of the clinical application of stem cell technology. Each chapter gives an in-depth and comprehensive analysis of the ethical or legal issues at stake. The early chapters give engaging new expositions on the permissibility of using embryos in stem cell research, in particular challenging our views about how we view and OCyconstructOCO the embryo in debates regarding stem cells. Later chapters move on to actual and potential clinical uses of stem cells and present novel arguments about these.

When things go wrong with assisted reproduction we should look at what’s best for everyone in the particular circumstancesA RTBs, as we must now call them, are becoming more and more frequent. In the recent United Kingdom case Mr and Mrs A, a “white” couple, gave birth to twins described as “black”. The mix up apparently occurred because a Mr and Mrs B, a “black” couple, were being treated in the same clinic and Mrs A’s eggs were fertilised with Mr B’s sperm. Mr and Mrs A love the twins and wish to keep them and the facts seem to be that Mrs A is the genetic mother of the twins but her partner is not the genetic father. Under English law, in assisted reproduction, the woman who gives birth to the child is the legal mother and this is true also in cases of surrogacy. I think there is no doubt in this case that English law has taken the right path and that it would be unconscionable to contemplate taking a child away from the woman who had undergone the risks and pains of pregnancy and childbirth and the bonding process that goes along with that when she wishes to keep the child particularly when there is no substantial and pressing evidence that she would be an unsafe parent. I argued this in my book The Value of Life4 and I think it is still true. So in this case justice, morality, and decency are served by confirming Mr and Mrs A as the parents of the children. Since in English law there is some ambiguity over paternity and how that is to be assigned and since Mr A is apparently not the genetic father, I think it is important …

Cadaver organs should be automatically availableThe shortage of donor organs and tissue for transplantation constitutes an acute emergency which demands radical rethinking of our policies and radical measures. While estimates vary and are difficult to arrive at there is no doubt that the donor organ shortage costs literally hundreds of thousands of lives every year. “In the world as a whole there are an estimated 700 000 patients on dialysis . . .. In India alone 100 000 new patients present with kidney failure each year” . Almost “three million Americans suffer from congestive heart failure . . . deaths related to this condition are estimated at 250 000 each year . . . 27 000 patients die annually from liver disease . . .. In Western Europe as a whole 40 000 patients await a kidney but only . . . 10 000 kidneys”1 become available. Nobody knows how many people fail to make it onto the waiting lists and fail to register in the statistics. “As of 24th November 2002 in the United Kingdom 667 people have donated organs, 2055 people have received transplants, and 5615 people are still awaiting transplants.”2Conscious of the terrible and unnecessary tragedy that figures like these represent I have been advocating for more than 20 years now some radical measures to stem this appalling waste of human life. The measure which is the subject of Hamer and Rivlin’s paper 3 concerns the automatic availability of all cadaver organs—a measure, which I first advocated publicly in 1983.4THE AUTOMATIC AVAILABILITY OF DONOR ORGANSWe need to begin by being clear about just what it is I propose and why. At the moment in the United Kingdom we …

This paper discusses the role of consent in decision making generally and its role in end of life decisions in particular. It outlines a conception of autonomy which explains and justifies the role of consent in decision making and criticises some misapplications of the idea of consent, particular the role of fictitious or “proxy” consents.Where the inevitable outcome of a decision must be that a human individual will die and where that individual is a person who can consent, then that decision is ethical if and only if the individual consents. In very rare and extreme cases such a decision will be ethical in the absence of consent where it would be massively cruel not to end life in order to prevent suffering which is in no other way preventable.Where, however, the human individual is not a person, as is the case with abortion, the death of infants like Mary , or in the very rare and extreme cases of those who have ceased to be persons like Tony Bland, such decisions are governed by the ethics of ending the lives of non-persons

My critics in this symposium illustrate one principle and three fallacies of disability studies. The principle, which we all share, is that all persons are equal and none are less equal than others. No disability, however slight, nor however severe, implies lesser moral, political or ethical status, worth or value. This is a version of the principle of equality. The three fallacies exhibited by some or all of my critics are the following: Choosing to repair damage or dysfunction or to enhance function, implies either that the previous state is intolerable or that the person in that state is of lesser value or indicates that the individual in that state has a life that is not worthwhile or not thoroughly worth living. None of these implications hold. Exercising choice in reproduction with the aim of producing children who will be either less damaged or diseased, or more healthy, or who will have enhanced capacities, violates the principle or equality. It does not. Disability or impairment must be defined relative either to normalcy, “normal species functioning”, or “species typical functioning”. It is not necessarily so defined

This chapter takes seriously the idea that in the future there will be no more human beings but that this is not one of the things that should concern us unless the creatures that replace us are worse than humans. I emphasize the continuity in evolution which shows us that not only are present‐day humans interspecies creatures, but also that objections to human–animal combinations, “humanimals” as I call them, are misconceived on any grounds other than those of safety. If the creatures that replace us are no longer human, then so long as they are better the loss of humanity will be well worth paying. One consequence will be that we should take the “human” out of human rights and possibly also the “dignity” out of human dignity. If we do this we will be true to Jonathan Glover's insight that what matters is that in the future there will be people and not at all what sort of people they will be so long as they are an improvement on what has gone before.

The recent in vitro derivation of gamete‐like cells from mouse embryonic stem (mES) cells is a major breakthrough and lays down several challenges, both for the further scientific investigation and for the bioethical and biolegal discourse. We refer here to these cells as gamete‐like (sperm‐like or oocyte‐like, respectively), because at present there is still no evidence that these cells behave fully like bona fide sperm or oocytes, lacking the fundamental proof, i.e. combination with a normally derived gamete of the opposite sex to yield a normal individual. However, the results published so far do show that these cells share some defining features of gametes. We discuss these results in the light of the bioethical and legal questions that are likely to arise would the same process become possible with human embryonic stem (hES) cells.

In a lively, interesting, and provocative paper Tuija Takala charges Julian Savulescu and me with bringing utilitarianism into disrepute and indeed with attempting to shoot it down, presumably in flames.1 Takala does not mince words. When she suggests that in our writings “utilitarianism is turning into the monster its critics always thought it was”, she is associating herself with those who charge us with propounding, again her words, the “inhumane theory that allows the sacrifice of minorities, the killing of the innocent, and simplistic calculations on the value of life”. Perhaps surprisingly for someone who identifies herself strongly with utilitarianism, Takala seems to take the worst and most ignorant critics of consequentialism generally, and of utilitarianism in particular, at face value and suggests that because their lazy, tendentious, and misdirected attacks on those they take to be utilitarians are often made against Savulescu and me that we somehow bear responsibility for this and for any charges they make, however ill judged or poorly supported by evidence

The interests or welfare of the child are rightly central to anydiscussion of the ethics of reproduction. The problematic nature of thislegitimate concern is seldom, if ever, noticed or if it is, it ismisunderstood. A prominent example of this sort of misunderstandingoccurs in the Department of Health's recent and important `SurrogacyReview' chaired by Margaret Brazier (The Brazier Report) and thesame misunderstanding makes nonsense of at least one provision of theHuman Fertilization and Embryology Act 1990. (The HFE Act).This paper explores and hopefully resolves this misunderstandingand sets out the ways in which the idea of theinterests of the child can legitimately function inbioethics

Human rights are universally acknowledged to be important, although they are, of course, by no means universally respected. This universality has helped to combat racism and sexism and other arbitrary and vicious forms of discrimination. Unfortunately, as we shall see, the universality of human rights is both too universal and not universal enough. It is time to take the “human” out of human rights. Indeed, it is very probable that in the future there will be no more humans as we know them now, because the further evolution of our species, either Darwinian or more likely determined by human choices, will, we must hope, result in the emergence of new sorts of beings better able to cope with the intellectual and physical challenges of the future. One example of the ways in which this is already happening is the sorts of cognitive enhancement that are already coming on stream. Another is signaled by stem cell research and the birth of regenerative medicine

The principle that each individual is entitled to an equal opportunity to benefit from any public health care system, and that this entitlement is proportionate neither to the size of their chance of benefitting, nor to the quality of the benefit, nor to the length of lifetime remaining in which that benefit may be enjoyed, runs counter to most current thinking about the allocation of resources for health care. It is my contention that any system of prioritisation of the resources available for healthcare or of rationing such resources must be governed by this principle. This can have apparently paradoxical conclusions in that it can seem wasteful to give someone with a very slim chance of a lifesaving treatment the same priority as someone with a much better chance. In an important and thoughtful recent paper, Julian Savulescu has concentrated on this apparent weakness and has argued for a particular conception of the good or benefit to be achieved by a healthcare system which purports to demonstrate the inadequacies of an equal opportunities approach to prioritisation and to replace it with an altogether better account. This paper will show that a rational ‘reasons based consequentialism’ is more in line with the equal opportunities approach, which I defended some time ago in these pages, than with that of Savulescu. I shall then examine more closely the conception of equal opportunities in health care and show that if we give weight to an individual's reasons, and what is expected to be good for them, we will opt for exactly the equality based account of distributive justice that I have recommended.

People have a powerful interest in geneticprivacy and its associated claim to ignorance,and some equally powerful desires to beshielded from disturbing information are oftenvoiced. We argue, however, that there is nosuch thing as a right to remain in ignorance,where a right is understood as an entitlementthat trumps competing claims. This doesnot of course mean that information must alwaysbe forced upon unwilling recipients, only thatthere is no prima facie entitlement to beprotected from true or honest information aboutoneself. Any claims to be shielded frominformation about the self must compete onequal terms with claims based in the rights andinterests of others. In balancing the weightand importance of rival considerations aboutgiving or withholding information, if rightsclaims have any place, rights are more likelyto be defensible on the side of honestcommunication of information rather than indefence of ignorance. The right to free speechand the right to decline to acceptresponsibility to take decisions for othersimposed by those others seem to us moreplausible candidates for fully fledged rightsin this field than any purported right toignorance. Finally, and most importantly, ifthe right to autonomy is invoked, a properunderstanding of the distinction between claimsto liberty and claims to autonomy show that theprinciple of autonomy, as it is understood incontemporary social ethics and English law,supports the giving rather than the withholdingof information in most circumstances