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General information

As cutting-edge technologies continue to reshape the landscape of health care, we are faced with profound ethical and legal dilemmas on our journey towards a brighter future. This book invites you to develop your critical thinking skills in relation to a number of themes in bioethics and law, including our duties to care for each other, for nonhuman animals, and for the nonhuman world. While the book engages with the law as a source of guidance and food for thought, unlike most publications in health care ethics and law, the emphasis is on the development of critical thinking skills in ethics. Each chapter ends with a list of questions that act as prompts in your own critical thinking journey.

The book is printed on climate-neutral paper. Emissions are offset by supporting a clean drinking water scheme in Zoba Maekel, Eritrea. It supports communities in renovating their boreholes so that people have access to clean water.

I provide the table of contents below, as well as a brief summary of each chapter.

Table of contents

Chapter 1: A short introduction to health care ethics and law

Chapter 2: Autonomy and its limits

Chapter 3: Duties of care, confidentiality, candour, and cost minimisation

Chapter 4: The creation and use of human embryos for human reproduction

Chapter 5: When is it acceptable to use non-human animals to promote human health?

Chapter 6: Research ethics

Chapter 7: Ethics in relation to pregnancy termination

Chapter 8: Is genetic engineering justified?

Chapter 9: Human embryo research in embryonic stem cell and cloning debates

Chapter 10: Ethical and legal issues related to the end of life

Concise summary (chapter-by-chapter)

Chapter 1: A short introduction to health care ethics and law

I argue that there is an urgent need to develop critical thinking skills in health care ethics and law, as the health care needs of a large number of organisms are in jeopardy, in spite of the fact that we have the capacities to address many of them. In order to do so, it is good to reflect upon one’s meta-ethical theory to determine what ethics is about. It is also important to reflect on how one’s values shape one’s principles and theories, and what ethical theory might be best to adopt. While much health care ethics theorising focuses on abstract/formal ethical theories that are applied insufficiently to reality, I argue that it is much more important to reflect upon different axiologies (theories of which concrete things/entities should be valued, and what value each has).

I argue for a theory that includes a deontological (duty-based) and a consequentialist element: the duty to promote positive consequences for one’s own health. This is not accompanied by an individualistic axiology. Rather, this theory is compatible with an axiology that ascribes intrinsic value to all entities. A crucial question here is what the intrinsic values of different things are, and how much value one should give to one entity relative to the value of another entity. Our axiologies are influenced by our reflections on what different entities are, which is the subject of ontology (theory of reality).

I outline two dominant ontologies, mechanistic materialism and dualism. I identify problems with both and sketch an alternative ontology, ‘panexperientialism’, that might both inspire and be inspired by a different outlook on what matters.

The practice of health care ethics is not only shaped by ethics, but also by different health care professions and by the law. This is why health care professionals and patients must take heed of relevant professional guidance and law, while avoiding legalistic approaches to health care.

The chapter concludes by providing some practical tools that can be used in ethical reasoning, including the use of logic, analogies, and thought experiments. These tools are applied to different areas of health care ethics in the ensuing chapters.

Questions raised by this chapter:

1. What are the different meta-ethical theories that have been described in this chapter and why might meta-ethical reflection be important?

2. What is your theory of health care ethics?

3. What does it mean to ascribe intrinsic value, which entities should be valued intrinsically, and how would you weigh up different entities’ values?

4. What ontology do you adopt and how might this inform your ethical theory?

5. What is the relevance of professional guidance and law for health care ethics?

6. Do you agree with the view that logic is important in health care ethics? Justify your answer.

7. Could you provide an example of how an analogy or a thought experiment might be helpful in health care ethics?

8. Why might legalism be a problem?

9. What is your view on the (ir)relevance of slippery slope arguments?

10. ‘Plants are sentient beings. Therefore, plants should be valued intrinsically.’ Do you think that this argument is logically valid?

Chapter 2: Autonomy and its limits

I argue that the concept of autonomy is relevant in health care and that health care professionals should reflect critically on what the law demands from them when human patients are unable to consent due to a lack of autonomy. I also argue that the need to balance the values of autonomy and beneficence can present great difficulties when health care professionals consider the health care interests of children, including their interests in safeguarding. The chapter ends with a discussion of the value of liberty and how it may need to be limited for health reasons in some situations.

Questions raised by this chapter:

1. What should health care professionals do in order to make sure that patients consent?

2. What should health care professionals do in situations where patients lack capacity?

3. Why might it be appropriate for health care professionals to consider advance refusals from patients who lack capacity?

4. In what circumstances would you condone restricting someone’s liberty for health reasons?

5. Do you agree with the view that there are some aspects of care that patients should not be allowed to refuse?

6. How should health care professionals decide whether or not to provide health care treatment to a child?

7. What counts as child abuse?

8. What should health care professionals do when they think that continued treatment of an infant is not in the infant’s best interests and when the parents insist on its continuation?

9. Do you agree with the view that a competent child’s views on medical treatment should be allowed to be overridden?

10. How should a health care professional handle a situation where they discover that a child has been subjected to female genital mutilation?

Chapter 3: Duties of care, confidentiality, candour, and cost minimisation

I discuss the duties of care, confidentiality, candour, and cost minimisation. As health care professionals can fail in these duties intentionally or through being reckless, careful attention must be paid to how these duties can be fulfilled and to how some of these might need to be balanced with other moral considerations.

Questions raised by this chapter:

1. How can health care professionals ensure that they act in accordance with their duties of care?

2. What should be demonstrated to determine whether a health care professional has breached their duty of care?

3. What should health care professionals do to safeguard patients’ right to confidentiality?

4. In what situations might it be appropriate for health care professionals to divulge confidential patient information to third parties?

5. What should a health care professional do if the police ask for information about a patient to investigate a potential offence that took place on a road?

6. How can health care professionals ensure that they act in accordance with their duty of candour?

7. When might it be appropriate to mislead patients?

8. What might be the benefits and disadvantages of using the notion of QALY in decisions about how to allocate funding for different treatments?

9. How would you decide between offering a lung transplant to a 75-year-old person who recently stopped smoking and a 25-year-old person who has never smoked when both are clinically equally suitable for transplantation?

10. Which criteria would you use to discriminate between patients who may need intensive care due to infection with a coronavirus when not all patients can receive treatment on the intensive care unit?

Chapter 4: The creation and use of human embryos for human reproduction

I provide an overview of the views adopted in the Warnock Report and in UK law on the use of embryos for reproductive purposes. I show that the arguments underpinning this framework do not provide a firm foundation for legislation. I recognise that, while it is one thing to undermine a range of arguments that have been used to deny high moral status to the young embryo, it is another matter to make a convincing case for why the young embryo should be granted such status. It is important to recognise that people who debate human embryo research often portray the young embryo as if he or she were an abstract, alien entity, the product of those who experiment with substances in test tubes in laboratories. The moral position that young embryos lack high status might be favoured by this mode of representation. At the same time, however, some modern technologies, for example, ultrasound sonography, allow us to represent embryos and foetuses in more concrete ways than has been possible until recently. This might perhaps make it more likely for some to be able to empathise with them, and prompt them to assign a higher status to them than they might have done otherwise. My view is that we should grant equal moral significance to all human beings. I am uncomfortable with the idea that we should value some human beings more than others. I also argue that health care professionals and patients should consider a number of other issues related to fertility treatments, including the use of PGD, sex selection, the creation of ‘saviour siblings’, mitochondrial donation, and issues related to whom should be able to access (information about) such treatments.

Questions raised by this chapter:

1. What are the main issues associated with the creation and use of human embryos for human reproduction?

2. What is the UK legal framework on embryo research, what are its ethical underpinnings, and how has it influenced other jurisdictions?

3. What is the position on embryo research developed by the Committee of Inquiry into Human Fertilisation and Embryology?

4. How has the Committee of Inquiry into Human Fertilisation and Embryology influenced different laws on embryo research?

5. What is the argument from sentience? Is it valid?

6. What is the argument from individuality? Is it valid?

7. What is the argument from twinning? Is it valid?

8. What are the key issues associated with pre-implantation genetic diagnosis?

9. When, if ever, should pre-implantation genetic diagnosis be acceptable to diagnose disability?

10. When, if ever, should pre-implantation genetic diagnosis be acceptable to diagnose the sex of an embryo?

11. When, if ever, should pre-implantation genetic diagnosis be acceptable to diagnose whether an embryo is a suitable tissue match?

12. When, if ever, should mitochondrial donation be allowed?

13. What should be the conditions for someone to be allowed to receive fertility treatment?

14. What should be the conditions for someone to be allowed to donate gametes?

15. When, if ever, should those who are conceived with donated gametes have access to genetic information about their donors, and what information should they be allowed to access?

Chapter 5: When is it acceptable to use non-human animals to promote human health?

In this chapter I grapple with the question of when it might be acceptable to use non-human animals to promote human health. I start with the observation that people use non-human animals in various ways to promote human health, and explore two common ways in which they are used: their use in research and their use for human nutrition.

With regard to the research usage, I sketch some laws that legislate the use of non-human animals, highlighting in particular that widespread support for the principle of necessity and the 3Rs questions many projects that use non-human animals, given that such animals are poor models for human beings. In addition, I engage with the question whether non-human animals should be used to model human health and illness, even if they might be good models, where I argue that an account of the moral standing of different non-human animals must be based on evolutionism. In this light, it would be particularly problematic to use non-human animals for research that does not benefit them where the animals are closely related to us.

With regard to the human use of non-human animals for food, I argue that, if the underlying reasoning is applied consistently across different domains, EU legislation on the use of non-human animals for research would lend significant support for significant change in laws on the use of non-human animals for food, resulting in a drastic curtailment in the human consumption of animal products. I sketch the moral arguments underpinning qualified moral veganism, which is defended against some challenges. The chapter also considers the ethical issues related to radically novel ways in which animal products could be produced, including the development of lab-grown meat.

Questions raised by this chapter:

1. What might be the reasons behind the fact that most books on health care ethics and law do not consider the use of non-human animals to promote human health? Why do you (dis)agree with them?

2. What moral theory do you advocate in relation to the human use of non-human animals?

3. What are the key issues to consider when human beings use non-human animals for research?

4. What is the relevant law on the use of non-human animals for research, and what legal change do you advocate, if any?

5. What do the positions of Singer, Regan, and Midgley entail for the use of non-human animals for research?

6. What would the EU law on the use of non-human animals for research imply for the human use of non-human animals for food, if the law in relation to the latter was made consistent with the law in relation to the former?

7. What moral reasons might someone adopt in support of carnism and in support of qualified veganism?

8. What arguments could be used to support or undermine the use of non-human animals for human nutrition?

9. How would you evaluate the morality of technologies that aim to produce lab-grown meat?

10. What useful functions, if any, might be fulfilled by committees that evaluate particular projects to use non-human animals? Justify your answer.

Chapter 6: Research ethics

In this chapter I engage with generic issues that apply to research projects, as well as with more specific issues that pertain to research that is carried out in clinical health care contexts. I identify the benefits and disadvantages of different types of clinical studies and discuss whether clinical trials should only take place when there is clinical equipoise. A failure to conduct RCTs in particular may be unethical and may result in a stagnation of ideas, a misplaced trust in unsystematised clinical experience, little development in available treatments, and a waste of resources. I also discuss the relevance of complementary therapies, question the use of alternative treatments, set out why research ethics committees play a valuable role in health care research, and how those who sit on such committees might go about evaluating research projects.

Questions raised by this chapter:

1. Why is consent important in relation to research?

2. Do you think research should ever be allowed without consent from participants? Justify your answer.

3. What do you think about the view that any research should be allowed, as long as participants consent?

4. What are the key ethical features of the relevant laws in relation to health care research?

5. Why should many RCTs never take place? Justify your answer.

6. What safeguards should there be to make sure that RCTs do not expose participants to disproportionate risks?

7. Should people ever be incentivised to participate in research studies?

8. What do you explain to potential participants when you want to recruit them to your study?

9. Should children be allowed to participate in research? Justify your answer.

10. What is your view about the opinion that health care trials should only be allowed if there is clinical equipoise?

Chapter 7: Ethics in relation to pregnancy termination

I propose how abortion legislation in the United Kingdom should be modified if it was informed by the view that all unborn human beings should be granted a right to life that should be allowed to be trumped in a limited number of situations. I argue that the current distinctions in the legal provisions for ‘able’ and ‘disabled’ foetuses as well as for ‘implanted’ and ‘unimplanted’ embryos cannot be maintained, and that greater protection of all human life must be enshrined into law. I also argue that there should only be a limited right to conscientious objection to participate in the provision of abortion services. There should be no right to object conscientiously to providing abortion services when there is a great risk that a pregnant woman’s life might be lost should the pregnancy be continued, and no right to refuse pregnancy counselling and referral of those who satisfy any of the revised legal grounds.

I recognise that, whether abortion law is altered in line with this proposal both depends and should depend on whether a valid democratic process is instigated towards legal reform. It is my hope that, if abortion legislation were amended in accordance with this proposal, health care professionals would provide those services that women should be entitled to, give serious consideration to facilitating or providing abortions that should be allowed, and reject those that should be prohibited.

Questions raised by this chapter:

1. What are the salient points of the law on abortion in the different jurisdictions of the United Kingdom?

2. What should a health care professional consider when a patient requests an abortion?

3. Why might abortion pose a moral problem for health care professionals?

4. What do you think should be the legal boundaries regarding the right to conscientious objection related to abortion?

5. Should abortion be allowed without any restrictions? Justify your answer.

6. What shape should the law on abortion have? Justify your answer.

7. What is your position on the legality of using medicines that might be abortifacient?

8. If one adopts human egalitarianism, would it imply that abortion should never be allowed? Justify your answer.

9. Do you think men should have any say in relation to whether or not an abortion should be allowed? Justify your answer.

10. Should everyone who wants it have free access to IVF treatments? Justify your answer.

Chapter 8: Is genetic engineering justified?

In this chapter I discuss ethical issues related to genetic engineering. While there is no doubt that genetics has advanced our understanding about health and illness a great deal, technologies that use the science of genetics can both promote as well as undermine health. Physical health can be improved and undermined, both directly and indirectly, through genetic engineering. The same applies to mental health. With regard to the mental health impacts of genetic engineering, a significant concern that has received relatively little attention in the literature is the concern that we ought to avoid creating unnatural things, and that genetic engineering is unnatural.

Although nothing is unnatural in the sense that everything is part of nature, I argue that the widely used distinction between the natural and the unnatural is nevertheless not meaningless. A semantic distinction between the natural and the unnatural can be drawn whereby the latter pertains to that which is affected by human culture and the former to everything else. More importantly, I argue that the fact that human culture pervades many natural events does not eliminate the distinction, but that it is appropriate to situate the natural and the unnatural at opposite ends of a spectrum. Where an entity is situated along this spectrum depends on the likelihood with which its specific essence might have come about counterfactually, which in this case means naturally. I distinguish between three gradations of unnaturalness, in spite of this continuity.

This distinction between the natural and the unnatural has moral relevance. While we must adopt a prima facie duty to safeguard the integrity of nature, the integrity of nature should not be protected at all costs. Doing so would stifle all human activity. In order to flourish, Homo faber must alter nature. However, an action that alters a natural entity’s teleology more significantly is, ceteris paribus, more problematic compared to another action.

This discussion is highly relevant to evaluate genetic engineering. As genetic engineering projects normally involve type 1 instances of the unnatural, they are morally suspect. In spite of this, the example of Huntington’s disease shows that this does not imply that genetic engineering is necessarily wrong. However, if a type 2 or type 3 intervention existed that could enhance the quality of life of the person in question equally effectively, we ought to prefer it.

Questions raised by this chapter:

1. Why might the question of what is natural be relevant for a discussion of genetic engineering?

2. Do you agree with the view that there are gradations of artificiality? Justify your answer.

3. How might differences in degrees of naturalness be morally relevant?

4. How might genetic engineering be used to benefit human health?

5. How might genetic engineering undermine human health?

6. Do you approve of the creation of Herman the bull?

7. Would you approve of using genetic engineering on a human embryo to correct the gene that predisposes for Huntington’s disease, if such were possible?

8. What do you think of the view that there is nothing new in genetic engineering as nature has engineered itself for a very long time?

9. What do you think of genetic engineering projects that aim at making some non-human animals better models to study human disease?

10. Would you eat genetically engineered plants or animals? Justify your answer.

Chapter 9: Human embryo research in embryonic stem cell and cloning debates

In this chapter, I provide an overview of the views that have been expressed by advisory bodies and members of Westminster Parliament in support of legal developments to allow research on young human embryos in the United Kingdom. While UK law has inspired similar legal reform in many other countries, this chapter shows that the arguments underpinning this framework do not provide a sound basis for the current legal position. My view on the status of the young human embryo is at odds with the views underpinning this framework. Rather than denying the embryo high moral status, I adopt the view that we should consider all human beings to be equal, rather than make the question of what value should be assigned to a human being dependent on how many properties, capacities, or experiences a human being might possess.

Questions raised by this chapter:

1. How would you sum up the moral reasoning underpinning the Human Fertilisation (Research Purposes) Regulations 2001, and what do you make of the arguments that were developed to support these?

2. What are the two arguments from potentiality in relation to the status of the young human embryo and do you think that these arguments are sound?

3. What is the argument from capacities in relation to the status of the young human embryo and why do you (dis)agree with this argument?

4. What is the argument from probability in relation to the status of the young human embryo and why do you (dis)agree with this argument?

5. What is the argument from mourning in relation to the status of the young human embryo and why do you (dis)agree with this argument?

6. What is the argument from ensoulment in relation to the status of the young human embryo and why do you (dis)agree with this argument?

7. What policy would you like to adopt in relation to human embryo research? Justify your answer.

8. Would you favour altering the law on human embryo research so that human embryos can be used for research when they are older than 14 days? Justify your answer.

9. What is the relevance of the scientific advances that have been developed on the basis of human embryo research for the ethics of embryo research?

10. Do you agree with laws that allow the creation of human admixed or hybrid embryos? Justify your answer.

Chapter 10: Ethical and legal issues related to the end of life

In this chapter I consider when treatment might be futile, whether it may ever be appropriate to withhold or to withdraw treatment from a patient, whether pain relief that might hasten one’s death should be taken or provided, whether physician-assisted suicide and euthanasia should be legal options, and how health care professionals might cater for the spiritual needs of patients. These issues are difficult and emotionally challenging. In a culture where ageism is challenged and where speaking about death and the dying process might be more widely accepted, there is a good chance that people may feel better able to cope with the prospect of dying and with making decisions that promote well-being when it is hard to do so.

Questions raised by this chapter:

1. How might health care professionals go about determining whether or not a treatment is futile?

2. How might a health care professional justify withdrawing treatment from a patient?

3. Do you agree with the withdrawal of treatments for patients who are in a persistent vegetative state? How might you try to justify your answer?

4. Do you think that there are aspects of care that should never be withheld or withdrawn from patient, and if so, which aspects? How would you justify this?

5. What do you think of the view that English law on assisting suicide discriminates against disabled people?

6. Do you think assisting suicide should be allowed? Justify your answer.

7. Do you think euthanasia should be allowed? Justify your answer.

8. If assisting suicide were allowed, what do you think should be the conditions?

9. If euthanasia were allowed, what do you think should be the conditions?

10. Do you think there may be situations where those who aid in the suicide of a patient should (not) be prosecuted?

11. How might the doctrine of double effect be applied to the provision of pain relief to a dying patient?

12. Do you agree with the view that withdrawing artificial hydration and nutrition from a terminally ill patient should always be accompanied by terminal sedation?

13. What should health care professionals do when the parents of competent children demand life-saving treatment that the child refuses?

14. What do you think of the view that good palliative care is always preferable to treating the patient in order to end their life?

15. How might health care professionals optimally look after the spiritual needs of patients who adopt Christianity, Islam, Hinduism, Sikhism, Judaism, or Buddhism?