Bioethics

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The new edition of the classic collection of key readings in bioethics, fully updated to reflect the latest developments and main issues in the field
 
For more than two decades,
has been widely regarded as the definitive single-volume compendium of seminal readings on both traditional and cutting-edge ethical issues in biology and medicine. Acclaimed for its scope and depth of coverage, this landmark work brings together compelling writings by internationally-renowned bioethicist to help readers develop a thorough understanding of the central ideas, critical issues, and current debate in the field.
Now fully revised and updated, the fourth edition contains a wealth of new content on ethical questions and controversies related to the COVID-19 pandemic, advances in CRISPR gene editing technology, physician-assisted death, public health and vaccinations, transgender children, medical aid in dying, the morality of ending the lives of newborns, and much more. Throughout the new edition, carefully selected essays explore a wide range of topics and offer diverse perspectives that underscore the interdisciplinary nature of bioethical study. Edited by two of the field’s most respected scholars,  Covers an unparalleled range of thematically-organized topics in a single volume Discusses recent high-profile cases, debates, and ethical issues Features three brand-new sections: Conscientious Objection, Academic Freedom and Research, and Disability Contains new essays on topics such as brain death, life and death decisions for the critically ill, experiments on humans and animals, neuroethics, and the use of drugs to ease the pain of unrequited love Includes a detailed index that allows the reader to easily find terms and topics of interest
 remains a must-have resource for all students, lecturers, and researchers studying the ethical implications of the health-related life sciences, and an invaluable reference for doctors, nurses, and other professionals working in health care and the biomedical sciences.

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The third method is genetic engineering: using enzymes to add to or subtract from a stretch of DNA.

Most people are unworried by the fact that a side‐effect of an environmental change is to alter the gene pool, at least where the alteration is not for the worse. And even in cases where environmental factors increase the proportion of undesirable genes in the pool, we often accept this. Few people oppose the National Health Service, although setting it up meant that some people with genetic defects, who would have died, have had treatment enabling them to survive and reproduce. On the whole, we accept without qualms that much of what we do has genetic impact. Controversy starts when we think of aiming deliberately at genetic changes, by eugenics or genetic engineering. I want to make some brief remarks about eugenic policies, before suggesting that policies of deliberate intervention are best considered in the context of genetic engineering.

Scepticism has been expressed about whether eugenic policies have any practical chance of success. Medawar has pointed out the importance of genetic polymorphism: the persistence of genetically different types in a population. 2 (Our different blood groups are a familiar example.) For many characteristics, people get a different gene from each parent. So children do not simply repeat parental characteristics. Any simple picture of producing an improved type of person, and then letting the improvement be passed on unchanged, collapses.

But, although polymorphism is a problem for this crudely utopian form of eugenics, it does not show that more modest schemes of improvement must fail. Suppose the best individuals for some quality (say, colour vision) are heterozygous, so that they inherit a gene A from one parent, and a gene B from the other. These ABs will have AAs and BBs among their children, who will be less good than they are. But AAs and BBs may still be better than ACs or ADs, and perhaps much better than CCs or CDs. If this were so, overall improvement could still be brought about by encouraging people whose genes included an A or a B to have more children than those who had only Cs or Ds. The point of taking a quality like colour vision is that it may be genetically fairly simple. Qualities like kindness or intelligence are more likely to depend on the interaction of many genes, but a similar point can be made at a higher level of complexity.

Polymorphism raises a doubt about whether the offspring of the three ‘exceptionally intelligent women’ fertilized by Dr Shockley or other Nobel prize‐winners will have the same IQ as the parents, even apart from environmental variation. But it does not show the inevitable failure of any large‐scale attempts to alter human characteristics by varying the relative numbers of children different kinds of people have. Yet any attempt, say, to raise the level of intelligence, would be a very slow affair, taking many generations to make much of an impact. This is one reason for preferring to discuss genetic engineering. For the genetic engineering of human improvements, if it becomes possible, will have an immediate effect, so we will not be guessing which qualities will be desirable dozens of generations later.

There is the view that the genetic‐engineering techniques required will not become a practical possibility. Sir Macfarlane Burnet, writing in 1971 about using genetic engineering to cure disorders in people already born, dismissed the possibility of using a virus to carry a new gene to replace a faulty one in cells throughout the body: ‘I should be willing to state in any company that the chance of doing this will remain infinitely small to the last syllable of recorded time.’ 3 Unless engineering at the stage of sperm cell and egg is easier, this seems a confident dismissal of the topic to be discussed here. More recent work casts doubt on this confidence. 4 So, having mentioned this scepticism, I shall disregard it. We will assume that genetic engineering of people may become possible, and that it is worth discussing. (Sir Macfarlane Burnet’s view has not yet been falsified as totally as Rutherford’s view about atomic energy. But I hope that the last syllable of recorded time is still some way off.)

The main reason for casting the discussion in terms of genetic engineering rather than eugenics is not a practical one. Many eugenic policies are open to fairly straightforward moral objections, which hide the deeper theoretical issues. Such policies as compulsory sterilization, compulsory abortion, compelling people to pair off in certain ways, or compelling people to have more or fewer children than they would otherwise have, are all open to objection on grounds of overriding people’s autonomy. Some are open to objection on grounds of damage to the institution of the family. And the use of discriminatory tax‐ and child‐benefit policies is an intolerable step towards a society of different genetic castes.

Genetic engineering need not involve overriding anyone’s autonomy. It need not be forced on parents against their wishes, and the future person being engineered has no views to be overridden. (The view that despite this, it is still objectionable to have one’s genetic characteristics decided by others, will be considered later.) Genetic engineering will not damage the family in the obvious ways that compulsory eugenic policies would. Nor need it be encouraged by incentives which create inequalities. Because it avoids these highly visible moral objections, genetic engineering allows us to focus more clearly on other values that are involved.

(To avoid a possible misunderstanding, one point should be added before leaving the topic of eugenics. Saying that some eugenic policies are open to obvious moral objections does not commit me to disapproval of all eugenic policies. In particular, I do not want to be taken to be opposing two kinds of policy. One is genetic counselling: warning people of risks in having children, and perhaps advising them against having them. The other is the introduction of screening‐programmes to detect foetal abnormalities, followed by giving the mother the option of abortion where serious defects emerge.)

Let us now turn to the question of what, if anything, we should do in the field of human genetic engineering.

The Positive–Negative Distinction

We are not yet able to cure disorders by genetic engineering. But we do sometimes respond to disorders by adopting eugenic policies, at least in voluntary form. Genetic counselling is one instance, as applied to those thought likely to have such disorders as Huntington’s chorea. This is a particularly appalling inherited disorder, involving brain degeneration, leading to mental decline and lack of control over movement. It does not normally come on until middle age, by which time many of its victims would in the normal course of things have had children. Huntington’s chorea is caused by a dominant gene, so those who find that one of their parents has it have themselves a 50 per cent chance of developing it. If they do have it, each of their children will in turn have a 50 per cent chance of the disease. The risks are so high and the disorder so bad that the potential parents often decide not to have children, and are often given advice to this effect by doctors and others.

Another eugenic response to disorders is involved in screening‐programmes for pregnant women. When tests pick up such defects as Down’s syndrome (mongolism) or spina bifida, the mother is given the possibility of an abortion. The screening‐programmes are eugenic because part of their point is to reduce the incidence of severe genetic abnormality in the population.

These two eugenic policies come in at different stages: before conception and during pregnancy. For this reason the screening‐programme is more controversial, because it raises the issue of abortion. Those who are sympathetic to abortion, and who think it would be good to eliminate these disorders will be sympathetic to the programme. Those who think abortion is no different from killing a fully developed human are obviously likely to oppose the programme. But they are likely to feel that elimination of the disorders would be a good thing, even if not an adequate justification for killing. Unless they also disapprove of contraception, they are likely to support the genetic‐counselling policy in the case of Huntington’s chorea.

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