A Journey into Bioethics

This quote is often used to illustrate the rather unique point we are in civilisation’s journey where real philosophical questions are raised about the advances we make. At the core of these questions exists humanity; specifically our relationship as a society, and as individuals with technology, its effects and products.

Bioethics concerns the philosophical questions raised by the fields of medical science, and biology. The debates raised bring together areas as diverse as ethics, religion, law, economics and politics. While such issues have been debated in the context of medicine since ancient times, it is only since the mid twentieth century that ‘modern bioethics’ has had a renaissance, as organ transplantation and palliative care (such as the use of respirators, dialysis, and so forth) began to raise questions about how and when care should be given, or withdrawn. These questions took bioethics from being an esoteric scholarly debate, to including thinkers from diverse fields, and the public consciousness.

During the twentieth century, the pace of change has meant that we now have access to technologies which can fundamentally alter the ‘nature’ of humanity, and allow us to control, modify and treat ourselves in increasingly novel ways. The field of bioethics now concerns itself with a vast swathe of inquiry, including (but not limited to) Abortion, Artificial Insemination, Assisted Suicide, Brain-Computer Interface, Cloning, Consent, Euthanasia, Genetic Therapy & Engineering, Healthcare, Life extension and support, Nano-medicine, Organ Donation, Population control, Stem cell research and Transplant trade.

These are all incredibly important and emotive issues which will shape the future of how our society relates to biology and medicine, shape the direction of medical and biological science, and even impact the nature of investment in these industries.

In this exclusive interview, we speak to a world expert in bioethics, Professor John Harris, Lord Alliance Professor of Bioethics at The University of Manchester. We talk to Professor Harris about the key debates, controversies and questions in bioethics.

[bios]To put his expertise in perspective, “On March 30th 2004 John Harris was appointed as the new joint Editor-in-Chief of The Journal of Medical Ethics the highest impact journal in medical and applied ethics. John Harris was elected a Fellow of the United Kingdom Academy of Medical Sciences (FMedSci) in 2001, the first philosopher to have been elected to Fellowship of this new National Academy which was established to serve “the medical sciences in the same way as the Royal Society serves the natural sciences and the British Academy serves the humanities”. He has been a member of The United Kingdom Human Genetics Commission since its foundation in 1999 and formerly served on the United Kingdom Government Advisory Committee on Genetic Testing from its foundation in 1996 until its closure. He is also a member of the Ethics Committee of the British Medical Association. He was one of the Founder Directors of the International Association of Bioethics and is a founder member of the Board of the Journal Bioethics and Associate Editor (Genetics) of the Journal of Medical Ethics , and a member of the Editorial Board of the Cambridge Quarterly of Healthcare Ethics and many other journals. John Harris is the author or editor of fifteen books and over two hundred papers. He has published in most of the leading philosophical journals in his field including, The Journal of Medical Ethics, Bioethics, The Cambridge Quarterly of Healthcare Ethics, The Hastings Centre Report and Philosophy & Public Affairs. He has also published in many of the leading science journals including Nature, Nature Reviews, Genetics, Science, Annals of the New York Academy of Science and The British Medical Journal. He currently holds research grants from the European Commission valued at around 1.5 million Euros.”[/bios]

Q: What is the relationship bioethics and society?

[John Harris] Bioethics is the study of all of the ethical issues that arise in the biosphere, so everything from medicine to stem cells, genetic modification of crops and so forth. I rather like to say that if morality is the science of the good, ethics is the study of that science, and bioethics is the study of that science as it relates to biosphere.

Q: What is the relationship between bioethics and the medical research, biotech and pharmaceutical industries?

[John Harris] Well, no industry and indeed no activity at all whether commercial or not should act unethically, or immorally and so the relationship of bioethics, or ethics, to anything it studies is the relationship of authority. One way of putting it is like this…. There’s a story told of a mother who said to her daughter, go and see what your little brother is doing, and tell him to stop. Many people think the role of bioethics is to go and see what the scientists or doctors are doing and tell them to stop because they are acting, by hypothesis, unethically. However I often find when I go and see what the scientists are doing, they are doing wonderful things and I’m very inclined to say “great guys, keep going!”

Looking at some of the key debates in bioethics

Stem Cell Research:

Q: There has been a great deal of at least “journalistic” controversy surrounding this field. What are your views on the role of stem cells in medicine and your thoughts on perhaps the personhood and sentience debate which gets applied?

[John Harris] This again is a complicated question. Stem Cells, as you know, are cells that have yet to specialise. So, in principle, they can make any type of tissue. So a stem cell can turn itself into cardiovascular tissue (heart tissue), or it can turn itself into hair follicles, or skin cells or whatever, so the great advantage is believed to be, and this is proving true, that they are a wonderful therapeutic agent. They make possible what is now being called “regenerative medicine” so that you can make any cell type of whatever sort in principle (you cannot always do it in practice) but in principle you can regenerate it, and repair damage, or indeed enhance function. So, for example, if stem cells prove safe for use in the brain, you might use them to repair brain damage, but you might use them to increase or enhance brain function. So that’s the promise of stem cells, but where it gets ethically messy is where the stem cells come from, and because stem cells are cells that haven’t yet specialised, most cells in the early embryo are just such cells, so embryos are a source of stem cells, but you can also get stem cells from adults, and you can also re-programme adult cells like skin cells to become stem cells, however insofar as embryos have up to now in science been the main source of stem cells, those who think the embryo is sacred, and that you mustn’t create it in order to destroy it, or you mustn’t use it instrumentally to save the lives of existing people, exist to stem cells, and that’s where all the issues like sentience and personhood come in because then the question is, if your deriving your stem cells from the embryo and if the embryo is, as the catholic church, as the last pope but one’s chief bioethics advisor said, “l’embrione è uno di noi” (the embryo is one of us) and if the embryo is one of us, and has the same rights that you and I do, then of course you can’t just kill it to save the lives of others. Sentience is just the capacity to feel, so sentience enters morality because we generally think its not very nice to cause others pain in other words for a creature that can feel, to cause it to feel things which are unpleasant, such as pain or whatever, is not a nice thing to do. So sentience arises when a creature is sentient and we always have reason not to cause sentient creatures pain or suffering.

On Genetics and Human Engineering:

Q: What are your views on the role of genetic engineering in the future of our species as a whole?

[John Harris] There are many roles for genetic manipulation. Engineering is a sort of interesting word, but I would rather talk of manipulation. One is of course that there are many genetic diseases and if you can change the genes that cause those genetic diseases so that they either no longer cause them or you can delete them so that a disease process is arrested or reverse, that’s one thing, that’s a therapeutic use. Evolution, of the Darwinian sort occurs when random changes in the genes, mutations as they are called, prove advantageous in survival terms and they become in built into the species because the individuals with that genetic mutation, do better, survive better, than the individuals without. And it is through that process that we have managed to evolve from our ape ancestors somewhere between five and seven millions years ago in Africa, and in turn our ape ancestors managed to evolve from simpler creatures right back to single celled organisms. So, the role of genetic changes in the future evolution of our species is crucial, and if we are to evolve further, that will be based on genetic changes. They will either happen randomly and slowly as a result of Darwinian ‘biological’ evolution or more likely, as I believe and I argued in my book ‘Enhancing Evolution’ (Princeton University Press 2007) through deliberate genetic changes made by humans in order to improve our species, to make us more resilient, more resistant to disease, and hopefully longer lived and healthier generally.

Q: Looking at the role of genetics in information technology. What do you see as the ethical implications of genetic information, will we see genetic discrimination (e.g. Insurance, jobs market) and do you think we will see “engineered versus not engineered”?

[John Harris] Starting with genetic discrimination. “Discrimination” just means “choosing”, it just means that a person who is capable of discrimination is capable of seeing the difference between X and Y. We use it to mean unjust or unfair discrimination where someone is the victim of an adverse choice where somebody else is selected over them for a job or, indeed, to stay alive. Now all discrimination of the latter sort, where it is unfair, and results in people being treated adversely for no good reason as compared to their fellows or, indeed, being not allowed to survive, is always wrong, and genetic discrimination is just one type of that sort of discrimination, one of the ways in which we humans can, if not stopped by law and morality, adversely discriminate against our fellows. Racial discrimination and gender discrimination are two examples of genetic discrimination because although race is not a matter of genes, skin colour is, and of course gender is a matter of genes, and so gender discrimination and, indeed, discrimination on the basis of skin colour are examples of genetic adverse discrimination and, of course, we don’t want any of this – it is unjustified and unreasonable. The more we can find out about peoples genes, and the more people systematically differ according to genetic differences, the more opportunity we have for genetic discrimination, and the more we should be vigilant to not permit it.

Looking at, for example, the genetic predisposition to disease to permit insurance companies to raise the premiums for people with particular genetic constitutions is a form of genetic discrimination. I believe it to be unjust, I am pleased to say the Human Genetics Commission (on which I serve) has resolutely resisted allowing insurance companies to use genetic test results as a basis for setting premiums or, indeed, granting insurance or not granting insurance. However, insurance companies still use another way of getting at genetic information namely ‘family histories’. They know that if your dad and mum died of the same thing, and its genetic, it’s very likely you will die of it too. So if they are allowed to ask you what your mum died of, its another way of effectively doing a genetic test, and I would stop that as well – but that’s my personal opinion, not the view of the Human Genetics Commission.

Q: In terms of the fact that we’re now seeing research into the human computer interface, cybernetics etc, what do you think are the ethical and moral implications this raises?

[John Harris] I don’t think there are any general implications. I believe that it is right to use technology and science and the innovation that it generates, whether the technology is mechanical, chemical or biological to improve ourselves, to make life better. We talk of “human enhancement”. For me an enhancement is necessarily good because if it wasn’t, it would not be called an ‘enhancement’ it would be a ‘disadvantage’ or ‘injury’ which would be unethical. As long as its good for you, its not only a reasonable thing to do, but may be morally required. One of the most fundamental moral principles is ‘do good’ or if you cant do good ‘don’t do any harm’ or if you cant avoid harm, ‘do the least harm possible’. If you believe that, and I think we all do, then you should use enhancement technologies, if they’re safe to improve human individuals and human kind. One of the ways of doing that is to use computers and if we can interface with computers in a way that enables our brain function to be better that would obviously be useful. For example, I am getting older now, and my memory isn’t what it was, and I do use my computer and my Blackberry to aid my memory. I don’t remember telephone numbers but they are in my Blackberry, I don’t remember addresses, they are in my computer, I don’t remember lots of facts, and the computer supplies those for me. This seems, to me, to be harmless and the more efficiently we can do this, perhaps by having implants that did it automatically for us, seems to be to pose no problem.

Q: The world is under huge population strain, looking at the fact that we are potentially on the cusp of a Malthusian catastrophe, with the world under immense population strain, is it time for an ethical debate on prolonging human life?

[John Harris] I think its time for action to reduce birth rate. Why worry about prolonging life when actually the problem of population increase is the birth rate, and China’s one child policy in the cities is a strategy for coping with that and it seems to me that the right thing to do is decrease the number of people being born and aim not only for a stable world population, but a declining one. That is both the moral way to deal with this, and the most efficient. We shouldn’t be in the business of curtailing people’s lives, or stopping people living long lives if we can help them to. What we should do is reduce the replacements.

If you ask me what the best mechanism is for reducing the population, it is women’s education. Experience has shown that women’s education is the biggest factor in reducing family size and since women’s education is a good thing for other reasons, that is the way we should be going!

On Assisted Suicide and Abortion:

Q: what do you find are the key debates needed on assisted suicide and abortion from the perspective of the individual making the choice and the society supporting the choice?

[John Harris] Abortion and assisted suicide (voluntary euthanasia) are two very different things. Let’s deal with assisted suicide and voluntary euthanasia first. I have written extensively on this and to do justice to these complex ideas would require much supporting argument, but let me try to encapsulate it in this idea. I believe that there is only one thing bad about dying, and that’s doing it when you don’t want to. So if you think about it, what we all want is not to die when we want to go on living, not to die when we don’t want to die, but dying when we do want to, is not a problem. So I think our moral efforts, and political efforts, should be devoted to minimising the amount of people that die when they don’t want to and the corollary of that is that we should allow people to die when they do want to and of course if we’re worried about population, the more people that die when they do want to the better.

Abortion is quite different because in voluntary euthanasia and assisted suicide, by hypothesis, the individual whose life it is, is making a decision about their own life, as to whether they live or die. If you believe in freedom, you will help people to implement their own autonomous choices about their life. However, of course, in the case of abortion or in the case of non-voluntary euthanasia, we are talking about ending the lives of individuals who cannot want to die. Those are very different. To take a view about the ethics of abortion, you have to take a view on the moral status of the embryo. If you think, as I said earlier, that the embryo is ‘one of us’ and has the same rights as you and I do, then of course it would be unethical to kill it without asking its permission first. On the other hand, most people think that it is inconceivable that the embryo has the same moral status, or indeed any moral status comparable to an adult person because it certainly the early embryo cannot think or feel, has no central nervous system etc and so cannot have rights or interests. The ethics of abortion turn on what you think of the moral status of embryo. But let me put to you this one suggestion. I think it is impossible to treat the embryo as if it were of full moral status; I’ll give you one illustration of that. Human sexual reproduction, the way most people reproduce, has a very high failure rate, around 80%. This means that you and I are sitting having this agreeable conversation, over the dead bodies of between three and five of our siblings that were conceived by our mother, but didn’t last very long. In order for this live birth that resulted in you, and resulted in me, to occur, some of our other siblings (between three and five) had to be conceived and die early, because that’s the way reproduction works. For every live birth between three and five embryos die; so everybody is sitting here, over the dead bodies of their siblings, and if they’re pleased to be alive, by hypothesis, they are pleased that those siblings didn’t survive!

On The Economics of Medical Care:

Q: Do you think access to healthcare is a human right? And, indeed, is it a responsibility of governments to provide universal healthcare for their citizens?

[John Harris] I think access to healthcare is very important. I tend not to use the language of rights if I can avoid it, except to add rhetorical force to what I say. The better way to look at it is not as a human right because you then have the problem that if a particular society doesn’t have the resources to deliver healthcare, are they denying human rights to their people? Well, not if they can’t generate the resources. For some African countries, for example, the available money for healthcare per capita, is something like ten dollars and you can’t deliver a comprehensive healthcare system on that sort of funding. What is an entitlement, and what is very important is firstly that we should care for other people if we can (including care for their health). This is one of our basic moral duties, partly the duty of beneficence (the duty to do good and not harm), and partly the rule of rescue (that if someone is in need of healthcare, they are in need of rescue) and a good person will try to rescue someone if he or she can. So rather than think of it in terms of rights, we have very strong moral reasons to provide healthcare to the best standard we can. That standard will vary from society to society.

Q: There has been some controversial debate on the ethics of providing care for certain specific conditions in the face of scarce resources, what are your views on the debate of “Who should be treated when not all can be treated?”

[John Harris] My firm belief is in equality, that each of us is as valuable as anyone else, and that value is not diminished by our health state, and is still less diminished by some bizarre view of our responsibility for our adverse health. So somebody in my view does not lose their entitlement to equal concern, respect and protection, just because they have one sort of disease rather than another, or even if they were partly responsible for the fact that they have a particular disease, illness or injury. I think the decent person, the moral person, will help another regardless and I hope that our societies will reflect that. So, for me, it doesn’t matter what illness people have, and that’s true for most doctors too.

The duty is to help the individual, not to enquire as to their moral character as they see it.

Q: Looking at pharmaceutical and medical research industries. Do you think that intellectual property has affected treatment? Do you think the role of investment into medical science and research has introduced ethical bias?

[John Harris] This is, again, a complex issue. You have to ask whether patents facilitate or inhibit science. This is a complex and factual question, not theoretical. There is a lot of good reason to believe that patents have an adverse affect on scientific freedom, and hence have an adverse affect on the ability of science to deliver the innovation and the pipeline of products, of whatever sort, that flows from innovation. What a patent does firstly is lead to secrecy in science as people don’t publish their results until patents are granted. Once they have a patent, this restricts others ability to utilise these products. Patent holders always claim that unless they can protect their intellectual investment, they have no motive to carry out the research that leads to it, and they will also not be able to make enough money to prove the principle that leads to the product whether a drug or otherwise and therefore not only will medicine suffer, but people will suffer. I am sceptical of that, but that’s a factual question. I think there is good reason to believe that it’s worth trying different systems of reward for science. The patent system is just one system of reward, but not the only one.

I think bioethics is pretty much neutral in the direction of research, but patents are not. If you are a “for profit” industry, you need to investigate things that will generate profits and that means that, of course, you are not interested in what are sometimes called ‘orphan diseases’ (diseases that affect very few people) and you are not often interested in diseases that affect only poor people, or people in poor countries. The current system of reward is not a very good way of making sure that all humans get an equal chance of benefiting from the products of science, and that is really what we want to do.
My hope is that we will move rapidly, to different systems of reward; where scientists will have more of an incentive to produce products which are not [necessarily] highly profitable, but are highly beneficial.

Q: We have seen, in some extreme cases, markets developing in human-organs (whether by the sellers volition, or otherwise). What are your views on the apparent commoditisation and internationalisation of organ transplants, and do you think there is any way to effectively regulate the markets of organ donation and transplanting?

[John Harris] I see nothing, in principle, wrong with the commoditisation of the body. I’m not getting paid for this interview, but I often give interviews for money, and that is part of the commoditisation of the body, I am selling my brain power or my power to talk. Most of us sell parts of our bodies in that way. Very few people could be gainfully employed if they weren’t selling their labour (which is a bodily product) and so forth. In terms of organ transplants, I think we need to distinguish between organs from the dead (the prime source of organs to transplantation) and organs from the living. In my view, there is no point in paying for organs from the dead, because we ought to have them for free. The dead don’t exist to be paid. We don’t want to reduce the supply by having to pay for it, thus increasing the costs of organ transplantation. They should be freely available, no dead person needs their organs, I promise you that! And no dead person has ever complained of their organs being taken. It is for those two reasons we should always have organs freely available from the dead. From the living, it’s a different question. The living have to consent. Live organ donations are more successful therapeutically than organs from the dead (cadavers) and many transplantations now take place from the living. In many countries, it is forbidden to sell live organs. I think that is ridiculous and wasteful. Its sometimes defended in terms of altruism, insofar as it should be a ‘gift’ relationship but that’s nonsense.

A neighbour of mine gave one of her organs freely to a stranger without pay (she didn’t want to be paid for it). Nonetheless, she suffered some financial hardship as she was off work and it was painful and so forth, and she was not adequately compensated (in my view) for that. I see no reason why she shouldn’t have been paid because everybody else was paid in the donation she gave. The transplant surgeon was paid, the nurses were paid, the transplant team were paid, the ambulance driver was paid, and the recipient of the organ was paid handsomely in kind! The only poor person who was required to be altruistic was the donor. That’s not altruism, that’s enforced altruism on the person who risks most, and is most generous. That’s not fair. I see, therefore, nothing in principle wrong in paying for live donor organs.

Can this be regulated? Of course it can. I will give you a simple recipe for its effective ethical management. Any organ market for live donor organs has to be confined to a self-governing entity, like a nation state or possibly like the European Union. There is one purchaser, purchasing organs on behalf of the community (like the NHS might) and distributing according to need. No direct sales, no buying from the poor and selling to the rich. Anybody who would sell their organ into the market benefits three ways. They get paid for the organ, they reduce the chances of anyone they care about (including themselves) needing an organ transplant and failing to get one. They benefit financially directly, they benefit because they contribute to a system which could wipe out shortage of donor organs, and they are paid because they have done something wonderful, and it is always great to do something wonderful. A market that was developed along those lines, I have written about this for almost ten years, I believe could be ethically managed and safe. The organs could be screened and checked, and it would ensure safety of recipients and so forth.

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As we look at the complex interplay of issues surrounding bioethics, we see an underlying common thread, that of morality.

Gerard Hughes, a former Chair of the Department of Philosophy at Heythrop College (University of London) describes (in Great Thinkers on Great Questions, by Roy Varghese) “Morality has to do with what enables human beings to flourish. How humans can flourish will, as Aristotle pointed out, and as has often been repeated since then, depend on the kind of beings that humans are. What it takes for a human being to flourish will depend on our common human nature and on the particular qualities which each person possesses as an individual, and on the environment, physical and social, in which that person lives. If something like that picture is correct, it will follow that morality will require us to treat different people in different ways, both because of their individual differences, and because of the different settings in which we encounter them. There will be no one single recipe for enabling a person to achieve their optimum development. Morality should reflect the complexity of human beings and their various physical and social environments, even when it can correctly be said that these environments are far from ideal for humans to have to live in.”

He continues… “Moral principles cannot sensibly be formulated independently of our knowledge of biology, psychology, economics and the human sciences generally. To the extent that our knowledge in these areas is incomplete or grossly inadequate, so will our grasp of moral truth be uncertain…. Two kinds of difficulty exist. The difficulty in knowing whether a human life is a worthwhile human life or not; and the difficulty of knowing by what precise steps a worthwhile human life can be fostered.”

The challenge here is to create parameters around which principles can be set. This is a challenge which is frequently undertaken in the field of human rights. James Griffin, The Whites Professor of Moral Philosophy Emeritus at the University of Oxford, describes in his 2008 book (entitled ‘On Human Rights’), “…In a statement issued through the Secretary-General of the United Nations, [it was] claimed that ‘the opportunity to decide the number and spacing of their children is a basic human right’ of parents. Does China’s one-child policy then really infringe a human right? Would a five- or a ten-child policy do so too?” This clearly raises the debate about parameters for the individual, and principles for a society in the face of a population crisis. He goes on to argue on the topics of abortion and selling organs, “If the government were to prohibit us from selling our body parts, as many governments are thinking of doing, would our human rights not be infringed? This proposed right is not dissimilar to a widely accepted human right – a right to the security of person. But one’s person’s being secure is considerably different from one’s body’s being in all respects under one’s own determination. How are we to tell whether we have such a strong right? We do not know. The term ‘human right’ is nearly  criterionless”.

To further illustrate this difficulty on setting criterion (parameters), let us refer to a famous paper by American Philosopher Judith Jarvis Thomson entitled, “A Defence of Abortion”. In this paper Judith describes, “Most opposition to abortion relies on the premises that the foetus is a human being, a person, from the moment of conception. The premiss is argued for, but, as I think, not well. Take, for example, the most common argument. We are asked to notice that the development of a human being from conception through birth into childhood is continuous; then it is said that to draw a line, to choose a point in this development and say ‘before this point the thing is not a person, after this point it is a person’ is to make an arbitrary choice, a choice for which in the nature of things no good reason can be given. It is concluded that the foetus is, or anyway that we had better say it is, a person from the moment of conception. But this conclusion does not follow. Similar things might be said about the development of an acorn into an oak tree, and it does not follow that acorns are oak trees, or that we had better say they are.”

Her thoughts on abortion were, by many, considered controversial, but they do highlight the convergence of science, philosophy and religion which had previously existed as separate disciplines. Our advances are making us question the very nature of humanity itself, its place in the ‘grander scheme of things’ and its obligations to itself as a society, to itself as individuals, and to itself as a metaphysical entity.

As technology increases its pace, these debates will only get more profound as it is conceivable, to take example from computing; that by the year 2020, we will have access to computers with the power of the human mind, and by 2050, to computers with the power of all human minds (Ray Kurzweil, The Singularity is Near). This raises philosophical debate about the nature of consciousness, and of life itself.

Needless to say, humanity must adapt to advancements, and be judged on the outcome of their behaviour. John F. Kennedy described this well, albeit in a different context, in a famous speech given in 1962, “…We set sail on this new sea because there is new knowledge to be gained, and new rights to be won, and they must be won and used for the progress of all people. For space science, like nuclear science and all technology, has no conscience of its own. Whether it will become a force for good or ill depends on man, and only if the United States occupies a position of pre-eminence can we help decide whether this new ocean will be a sea of peace or a new terrifying theatre of war. …Many years ago the great British explorer George Mallory, who was to die on Mount Everest, was asked why did he want to climb it. He said, “Because it is there.” Well, space is there, and we’re going to climb it, and the moon and the planets are there, and new hopes for knowledge and peace are there. And, therefore, as we set sail we ask God’s blessing on the most hazardous and dangerous and greatest adventure on which man has ever embarked.”