The moral obligation to create children with the best chance of the best life

Bioethics ISSN 0269-9702 (print); 1467-8519 (online) Volume 23 Number 5 2009 pp 274–290 THE MORAL OBLIGATION TO CREATE CHILDREN WITH THE BEST
CHANCE OF THE BEST LIFE
Keywords
genetic selection,
ABSTRACT
According to what we call the Principle of Procreative Beneficence (PB), couples who decide to have a child have a significant moral reason to select the child who, given his or her genetic endowment, can be expected to enjoy the most well-being. In the first part of this paper, we introduce PB, explain its content, grounds, and implications, and defend it against various objections. In the second part, we argue that PB is superior to competingprinciples of procreative selection such as that of procreative autonomy.
In the third part of the paper, we consider the relation between PB anddisability. We develop a revisionary account of disability, in which disabilityis a species of instrumental badness that is context- and person-relative.
Although PB instructs us to aim to reduce disability in future childrenwhenever possible, it does not privilege the normal. What matters is notwhether future children meet certain biological or statistical norms, but whatlevel of well-being they can be expected to have. One of the deepest intuitions of many people is that a The view we will defend in this paper seems to run child is a gift, to be cherished and loved for what she is.
directly counter to this common intuition. According to To be a good parent is to be prepared to accept and The Principle of Procreative Beneficence (PB),2 nurture one’s child, regardless of that child’s talents or If couples (or single reproducers) have decided to disabilities. This passage by Michael Sandel crystallizes have a child, and selection is possible, then they have a significant moral reason to select the child, of the To appreciate children as gifts is to accept them as they possible children they could have, whose life can be come, not as objects of our design or products of our expected, in light of the relevant available informa- will or instruments of our ambition. Parental love is tion, to go best or at least not worse than any of the not contingent on the talents and attributes a child happens to have. We choose our friends and spouses atleast partly on the basis of qualities we find attractive.
But we do not choose our children. Their qualities 2 This principle was first presented by one of the authors in J.
are unpredictable, and even the most conscientious Savulescu. Procreative Beneficence: Why We Should Select the Best parents cannot be held wholly responsible for the kind Children. Bioethics 2001; 15: 413–426. We’ve modified several aspects ofthe original formulation.
3 PB is silent on a number of further questions in procreative ethics.
It is a claim only about same number choices: about selection of one 1 M. Sandel. The case against perfection. Atlantic Monthly April 2004.
child out of those possible. It is not meant to offer guidance in choices See also M. Sandel. 2007. The Case Against Perfection. Harvard: between, e.g., one versus several children of differing endowments.
Similarly, PB assumes that a decision to have a child has been taken.
Address for correspondence: University of Oxford – Oxford Uehiro Centre for Practical Ethics, St Cross College, St Giles, Oxford OX1 3LZ, UnitedKingdom. Email: 2008 The Authors. Journal compilation 2008 Blackwell Publishing Ltd., 9600 Garsington Road, Oxford OX4 2DQ, UK and 350 Main Street, Malden, MA 02148, USA.
The Moral Obligation to Create Children with the best Chance of the Best Life
This principle tells prospective parents to aim to have screening or ultrasound); (2) in vitro fertilization (IVF) the child who, given her genetic endowment, can be and preimplantation genetic diagnosis (PGD).
expected to enjoy most well-being in her life. There may The most accessible reliable prenatal method is chori- be more than one such child, but for simplicity’s sake, we onic villous sampling (CVS) at about 11 weeks gestation, write as if there is a single such possible child, which we’ll which provides both anatomical information about the refer to as the most advantaged child. This is a compara- fetus and genetic information. At 11 weeks, couples in tive concept. It refers to the child, of those possible for the many legal jurisdictions are free to choose to terminate a parents, whose life can be expected to go best. It does not pregnancy on any grounds in practice. Amniocentesis at refer to a child who is ‘perfect’ or more advantaged or about 14 weeks provides similar information and choice.
better off than other existing children. PB therefore in no Serum screening detects markers of fetal status in the way suggests that people should have no child at all maternal blood. Ultrasound at 11 and 20 weeks gestation rather than one who is less advantaged than other exist- is frequently performed providing fine anatomical detail PB is at polar odds with the common anti-selection PGD provides an alternative which does not require view, expressed by Sandel, that children should be abortion.5 It requires IVF and single sperm injection.
accepted as gifts of Nature or God. But PB also conflicts Embryo biopsy removing one or two cells is performed with most pro-selection views. The vast majority of those on day 3 at the 8-cell stage. PGD can be used to detect who support selection deny that we ought to select the chromosomal abnormalities (by Fluorescence In Situ most advantaged child. Some believe that reproduction is Hybridization (FISH)) and single gene disorders such as a private matter, immune to moral scrutiny. Others think cystic fibrosis or haemophilia. Frequently used FISH that morality allows people to aim at less than the best, or kits test for either chromosomes 13, 16, 18, 21, 22 or for gives people complete freedom when making procreative 13, 18, 21, X and Y. FISH can thus be used for embryo decisions. There is thus a significant distance between PB sexing. A newly developed variant of this technique, and the moral intuitions not only of opponents of genetic called pre-implantation genetic haplotyping (PGH), selection, but also of many of its proponents.
takes a single cell and multiplies its genetic complement In Part I, we introduce PB and correct common mis- a millionfold. It may allow testing for a wider range of understandings. In Part II, we argue that PB is superior conditions and will vastly expand the use of genetic to alternative procreative principles, and in Part III, we consider the relation between PB and one crucial test-case Genetic testing is currently used to detect chromo- for any account of the ethics of procreative selection, the somal abnormalities, such as Trisomy 21 (Down Syn- drome) and single gene disorders like cystic fibrosis.
Recently, genetic testing has been extended to coverinherited cancer syndromes, adult onset neurological PART I. THE PRINCIPLE OF
conditions such as Huntington Disease and Alzheimer’s, PROCREATIVE BENEFICENCE
sex selection6 and minor abnormalities. As gene chips aredeveloped, thousands of genes could be tested at one time. There is no reason in principle why embryos in the It is now possible to attempt to have a baby with desired future could not be selected on any genetic basis. Much properties by preconception, preimplantation and prena- progress has already been made in identifying the genetic tal selection. The most reliable preconception method isflow cytometric separation of X and Y sperm.4 In the future, it may be possible to test sperm for chromosomal In practice, prenatal testing is often recommended as follow-up to PGD, and therefore abortion remains a possibility. See J.R. Botkin.
and genetic abnormalities and qualities.
Ethical Issues and Practical Problems in Preimplantation Genetic Diag- Postconception, selection is possible by: (1) prenatal nosis. J Law Med Ethics 1998; 26: 17–28.
testing (chorionic villus sampling, amniocentesis, serum 6 In a recent survey of 190 U.S. PGD clinics, 42% have provided PGDfor non-medical sex selection. Nearly half of these clinics (47%) are It is neutral on the question of what reasons we have to have children.
willing to defer to parental preferences and provide PGD for non- Finally, PB assumes that the child created will be the reproducers’ medical sex selection under all circumstances. Forty-one percent will only provide the service for a second or subsequent child. Seven percent 4 E.F. Fugger et al. Births of Normal Daughters After Microsort will only provide PGD for sex selection if there is another medical Sperm Separation and Intrauterine Insemination, In-Vitro Fertiliza- reason to undergo PGD. See S. Baruch, D. Kaufman & K.L. Hudson.
tion, or Intracytoplasmic Sperm Injection. Human Reprod 1998; 13: Genetic testing of embryos: practices and perspectives of US IVF clinics. Fertil Steril 2008; 89: 1053–1058.
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basis of congential conditions such as deafness.7 could time conception so that their future child would be Recently, a genetic test (ACTN3) was developed to born in hospitable conditions, when they have built suf- identify physical talent at either endurance or sprinting ficient financial, material and emotional resources to events, and a single gene polymorphism has been postu- provide a good life for their child. It would be a moral lated to be associated with perfect pitch. Behavioral defect in parents to pay no consideration to their per- geneticists are studying the genetic component in non- sonal, financial and health situation when deciding when disease states such as cognitive and physical abilities, to have a child, especially when they expect those circum- personality traits, propensity to addiction, sexual orien- stances to change. These choices involve creating a dif- ferent child, who will have better prospects.
The possibility of choosing embryos according to non- Our moral intuitions are clearest when the timing of disease characteristics has raised heated debate.8 PB conception can be expected to have a direct effect upon offers one simple answer: there is reason to obtain and the health of a future child. Imagine that the rubella virus use all genetic and other information about disease sus- mutates so that it becomes highly virulent and resistant to ceptibility and non-disease states to make a decision to current vaccination, and that a rubella epidemic occurs.
select the most advantaged child. PB, however, is highly A couple decides to have a child. However, if the woman controversial.9 Some reject it on principled grounds. But falls pregnant now, it is highly likely that she will contract others may reject it because they are not clear about its rubella and the baby will be born with congenital rubella precise content, grounds, or implications.
– blind, deaf and with severe brain damage. In a fewmonths, the epidemic will have passed and she wouldlikely have a normal child.10 It is uncontroversial that the woman ought to wait a few months and have a normal rather than a brain- Most people will agree that there is a moral defect in damaged child. Note this is not out of consideration for parents who intend to conceive a child but are indifferent the welfare of the child she will have. If she waits several to whether their future child will be born with the poten- months, a different sperm and egg will create a different tial for a good life. If prospective parents have moral child to the one which she would have had during the reasons to care about the potential for well-being of their epidemic. She is faced with an identity-affecting choice: a future children, then it would seem that they should also choice between child A with rubella or child B without have reason to aim to have children who are more advan- rubella. If A’s life with congenital rubella would be so bad taged rather than leave this to chance or nature. Until it is not worth living, she clearly has a reason not to bring recently, however, people only had few means to promote it into existence. But even if the future child’s life can be this end. They could select a partner on the basis of his or expected to be tolerable, most people would still agree her genetic attributes and parenting potential, and they that the woman has reason to choose child B if it isexpected to have a better life.11 Indeed, we believe that 7 Around 1 in 1500 children have some form of genetic deafness, and many would further agree that if, because of some over 100 different mutations that cause congenital deafness have been medical condition, a couple could have either a child with already been identified. However, about 40% of congenital deafness iscaused by mutations of a single gene (connexin-26). See C. Petit. From average health and talents now or an especially healthy deafness genes to hearing mechanisms: harmony and counterpoint.
and gifted child if they waited one month, then the couple Trends Mol Med 2006; 12: 57–64.
has a reason to wait before having a child. Couples 8 L. Kass. 2002. Life, Liberty and the Defense of Dignity: the Challenge often wait years to build financial, emotional and other for Bioethics. San Francisco: Encounter Books; F. Fukuyama. 2002.
resources, in order to provide a better environment for Our Posthuman Future: Consequences of the Biotechnology Revolution.
New York: Farrar, Strauss, & Giroux; G. Stock. 2002. Redesigning their future child to grow. In waiting to have a family, Humans: Our Inevitable Genetic Future. New York: Houghton Mifflin.
they are selecting a child who will have a better life. Once 9 For criticism of PB, see K. Birch. Beneficence, Determinism and the question of the moral permissibility and opportunity Justice: an Engagement with the Argument for the Genetic Selection costs of certain means of selecting children is set aside, of Intelligence. Bioethics 2005; 19: 12–28; I. De Melo-Martin. On Our commonsense morality seems committed to favouring Obligation to Select the Best Children: A Reply to Savulescu. Bioethics2004; 18: 72–83; P. Herissone-Kelly. Procreative Beneficence and theprospective parent. J Med Ethics 2005; 32: 166–169; J. Glover. 2006.
Choosing Children. Oxford: Oxford University Press: 53–54; Michael 10 See D. Parfit. 1976. Rights, Interests and Possible People. In Moral Parker ‘The Best Possible Child,’ J Med Ethics, 2007; 33: 279–283; Problems in Medicine S. Gorovitz et al. eds. Englewood Cliffs: Prentice Sandel, op. cit. note 1; A. Buchanan et al. 2000. From Chance to Choice. Cambridge: Cambridge University Press: chapter 6 discusses objections 11 D. Parfit. 1986. Reasons and Persons. Oxford: Oxford University 2008 The Authors. Journal compilation 2008 Blackwell Publishing Ltd.
The Moral Obligation to Create Children with the best Chance of the Best Life
selection of children who are more advantaged, even if it child with better prospects is that that child will benefit may not give it as much weight as to the prevention of more than the other would by being caused to exist.
According to the impersonal version, our reason is that Thus, although many respond with repugnance to the selecting the most advantaged child would make the idea that we should choose what our future children outcome better, even if it is not better for the child would be like, it is in fact implicit in commonsense moral- created. It is possible to support PB on either view. If by ity that it is morally permissible and often expected of selecting a child with better prospects we are also bene- parents to take the means to select future children with fiting her, then this is a significant reason to make this greater potential for well-being. These intuitions survive choice. If we prefer not to speak of benefit in such cases, reflection on the fact that these are identity-affecting then we can say that there is a significant reason to select choices. Those ethicists who claim that it is always the more advantaged child simply because this will be the morally forbidden to select our children must, if they are better outcome.14 We do not take a stand on this difficult to be consistent, reject these existing moral norms, philosophical issue. As we have tried to show, our moral attitudes, and intuitions.12 Such attitudes do not express intuitions about timing of conception recognize reasons hubris or a drive to master the ‘mystery of birth’, as to select future children. PB is an account of the content Sandel claims. Nor do they ‘disfigure the relation between of these reasons, not an explanation of what might parent and child’ or ‘deprive the parent of the humility and enlarged human sympathies’.13 These are the familiar If we believe that impersonal or wide person-affecting and morally admirable attitudes of many prospective reasons exist, then it might seem that our reasons to select parents. And they are entirely compatible with later cher- the most advantaged child would have equal force to our ishing and loving one’s children – once these have come reasons to promote the well-being of an existing child.
That is, we would have as much reason to select a child Often people object to genetic selection because they free of rubella as we would to cure a child with rubella.15 believe that it involves the destruction of a human being Commonsense morality, however, seems to view the with interests. These people are objecting, not to selection latter reasons as stronger. Most people believe that it is per se or to the aim of having children with greater poten- worse to fail to treat deafness than it is to allow a deaf tial for a good life, but to specific means of selecting child to be born instead of a hearing one. But even if the children. Their objections would not apply to gamete expected well-being of a future child should weigh less selection. And, again, if they are to be consistent, those than the expected well-being of existing children, reasons who hold this view must reject the moral permissibility of of PB will still be significant reasons – reasons often widely practised therapeutic uses of such procedures – all strong enough to outweigh the reasons given by the inter- prenatal and preimplantation genetic diagnosis. More- ests of parents and other existing people. And it is impor- over, disease itself is morally significant only in so far as tant not to confuse the strength of reasons with their it reduces well-being. The relevant moral principle under- content. Even if reasons of PB are weaker in strength than lying these widely accepted practices is not that we should reasons to benefit existing people, it does not follow that have healthy children, but that we should have children these are not nevertheless reasons to aim to have anything less than the most advantaged child.
We present PB as a moral obligation. This claim can be misunderstood. Some hold that if there is a moral obli- The nature of our moral reasons to select the gation to do X then this implies that we absolutely must do X. If PB stated an obligation in this sense, we would Given that in selecting a more advantaged child we are also bringing a different person into existence, what Absolute Obligation Version of PB. If reproducers have
might ground a moral obligation or reason to select such decided to have a child, and selection is possible, then a child? Like competing principles of procreative ethics, they have an absolute moral obligation to select the PB is compatible with different accounts of reasons to select future children. It can take either a wide person- There are other ways of grounding PB. Virtue ethicists, for example, could claim that it is a part of the concept of being a good parent that affecting form or an impersonal form. According to the one should aim to have children with the best prospects of the best life.
wide person-affecting version, our reason to select the 15 Parfit holds that there is no moral difference between a treatmentthat would cure a disease by altering an existing fetus or by bringing 12 For such blanket rejection of selection, see Kass, op. cit. note 8.
a different, healthy fetus into existence. (See Parfit’s Two Medical 13 Sandel, op. cit. note 1, pp. 45–46.
Programmes example in Parfit, op. cit. note 11, pp. 367–368).
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child, of the possible children they could have, whose Talk about moral obligation can be misunderstood in another way. On an understanding of obligation that hasits roots in Mill, the existence of an obligation implies the It is doubtful that any non-trivial moral principle is this threat of sanction. If this is taken to mean that there is a strong. PB is not an absolute obligation. It is the claim conceptual tie between obligation and moral disapproval, that there is a significant moral reason to choose the better then PB is compatible with such a tie. Egregious procre- child.16 The principle states, not what people invariably ative choices deserve our disapproval just like other fail- must do, but what they have significant moral reason to ures to meet one’s obligations, such as failure to protect do.17 In this respect, however, PB is not different from the welfare of one’s children. But although PB claims that most other moral principles. It is not different from our parents have a moral reason to aim to have the most moral reasons to promote the welfare of our existing advantaged children, when such a choice is possible, this children or from other reasons of beneficence, such as is compatible, at the legal level, with enjoyment of a right caring about the welfare of future generations. Those to autonomy, including the right to make procreative who prefer to think of such reasons as generated by moral choices which foreseeably and avoidably result in less obligations should also think of reasons of PB as gener- than the best child.18 Whether the public interest ever ated by an obligation. Since we do not think that any- justifies legal constraints on reproductive choice is a thing turns on this distinction, in what follows we will use moral reason and moral obligation interchangeably.
When the obligation to have the most advantaged child is not overridden by sufficiently strong opposing moral reasons, it will be true that parents ought, all things con-sidered, to select the most advantaged child. PB is not just In decision-theory, the expected value of an outcome is the claim that parents are permitted to choose the most the value of that outcome multiplied by the probability of advantaged child. If the competing reasons are stronger, it occurring. When we make decisions, the option we then it is not permissible to choose the most advantaged should choose is the one which maximizes expected value.
child. And if there aren’t such reasons, or they are In the case of selection and reproductive decision- weaker, then it is not morally permissible to choose any- making, the outcome of interest should be how well a new person’s whole life goes, that is, well-being. PB thus states What might these competing normative reasons be? that we have reason to select the child who is expected to They include the welfare of the parents, of existing chil- have the most advantaged life. We cannot know which dren, and of others, possible harm to others, and other child will have the best life. Those born with the greatest moral constraints. For example, there can be reasonable gifts and talents may squander them while those born to disagreement about the range of cases to which PB great hardship may overcome enormous obstacles to lead applies. The scope of the principle will depend on our the best of lives.19 It is not surprising that there are such stand on moral questions about genetic manipulation, limits on what prospective parents can reasonably hope IVF, abortion, or the moral status of embryos. It will also to achieve through genetic selection. Unless one accepts a depend on the availability and safety of relevant technol- crude form of genetic determinism, it makes little sense to ogy. But it is important to distinguish an outright denial worry that the qualities of selected children would lose of PB from the view that its scope should be circum- scribed by other moral considerations. Even those who A common objection to PB is that there is no such deny that parents are allowed to select the most advan- thing as a better or best life.20 It is hard to defend such a taged child will often admit that parents should hope for claim. What constitutes a good life is a difficult philo- a child who is naturally endowed with talents and capaci- sophical question. According to hedonistic theories, it ties that will make it likelier that she will lead a good life.
consists of having pleasant experiences and being happy.
When people have such wishes, they may be implicitlyrecognizing the normative force of PB.
18 J. Savulescu. Deaf lesbians, ‘designer disability,’ and the future ofmedicine. Br Med J 2002; 325: 771–773.
16 The strength of the reason given by PB to select embryo A rather 19 In decision-making under uncertainty, other decision rules besides than B would reflect the difference in expected well-being of the two the maximization of value may also be rational. In particular, it might possible children: the more significant this difference, the stronger the be rational for prospective parents to be averse to risk and to prefer, for reasons. Although the strength of the reasons given by PB varies in this example, an embryo which is expected to have a good life over one way, we shall refer to them as significant moral reasons in order to mark whose life is likely to go better but which also faces a serious risk of a their relative strength compared with competing moral reasons.
17 For this misunderstanding, see e.g. De Melo-Martin, op. cit. note 9.
20 See De Melo-Martin, op. cit. note 9; Parker, op. cit. note 9.
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The Moral Obligation to Create Children with the best Chance of the Best Life
According to desire fulfilment theories, what matters is PART II. COMPETING PRINCIPLES OF
having our preferences fulfilled. According to objective PROCREATIVE SELECTION: MUST
good theories, certain activities are intrinsically good – PARENTS AIM FOR THE BEST?
developing deep personal relationships and talents,gaining knowledge, and so on. PB is neutral with respect We have argued that selection of a future child is morally to such philosophical disputes about the nature of the permissible and that parents have reasons to care about good life. But although there is this philosophical dis- the potential well-being of future children. But these agreement, there is considerable consensus about the claims are compatible with a range of pro-selection views.
particular traits or states that make life better or worse, a Anti-selectionists reject not just PB but all principles of consensus that would rule out many procreative choices procreative selection, whereas pro-selectionists disagree as grossly unreasonable. Few if any would deny that about the moral principles that should guide such choice.
chronic pain tends to make a life worse or that joy makes Most of the pro-selection views defended so far are at a life better. All plausible moral theories have to make odds with PB. The weakest pro-selection view is such judgments – judgments about harms and benefits, orthings that make a life go better or worse. PB doesn’t rely Procreative Autonomy. If reproducers have decided to
on some special and controversial conception of well- have a child, and selection is possible, then any procre- being. All it asks us is to apply in our procreative deci- ative option selected by reproducers is morally permis- sions the same concepts we already employ in everyday sible as long as it is chosen autonomously.22 situations. And aiming at the best is compatible with According to this principle, it is permissible for parents thinking that the concept of the most advantaged life to select the best, but it is equally permissible for them to is plural and open-ended. If different forms of life are select the worst. Procreative Autonomy is an extremely equally good, or if the amount of well-being realized in implausible moral principle. It would have some plausi- each is incomparable, then parents can reasonably choose bility if genetic selection was morally permissible but either option. But there are plenty of cases where we can parents had no reasons to care about the genetic potential rank the goodness of lives. We do so in numerous moral of their future children. But morality is not indifferent to decisions in everyday life, especially in bringing up and the choice between a child who will have a fulfilling life educating our children. To deny this is to reject, not PB, and one who will live a brief life of misery and torment.
We suspect that most people who support Procreative A parallel objection is that, even if there is ranking of Autonomy do so because they fail to distinguish moral better and worse lives, ordinary parents trying to follow and legal principles. PB is a moral principle. It states what PB will make serious mistakes. This, however, is not an would be morally right or wrong for reproducers to do.
objection to the truth of PB but only a worry about the To repeat, PB is not the view that reproducers should be dangers of its misapplication. To be sure, PB does place coerced into selecting the most advantaged child, or pun- great responsibilities in the hands of prospective parents, ished if they don’t. Liberal political theory gives strong responsibilities some might abuse. Parents may be reasons to grant parents Procreative Autonomy. But this swayed by fashion, superstition and outrageous concep- is compatible with thinking that some legal choices made tions of the good life to create children with very bad by parents are nevertheless deeply wrong.23 prospects. However, this problem is not unique to PB.
A version of procreative autonomy is the view Nicho- Parenting does place great responsibilities in the hand of las Agar calls Liberal Eugenics. According to this view, parents, and although parents are given much freedom in genetic selection should be voluntary, state-neutral, and the exercise of these responsibilities, there are legal con- straints that aim to prevent the most egregious parentingchoices. PB is compatible with setting legal constraints on [L]iberal eugenicists propose that [reproductive genetic parental autonomy – parents, for example, should be prevented by law from selecting children whose lives are 22 See J.A. Robertson. 1995. Children of Choice. Princeton University Press; J. Harris. 1998. Rights and Reproductive Choice In The Future ofHuman Reproduction: Ethics, Choice, and Regulation. J. Harris andS. Holm, eds. London: Clarendon Press: 5–37; R. Dworkin. 1994. Life’sDominion. New York: Vintage Books.
23 Note that a legal right to Procreative Autonomy may itself rest on the 21 See the discussion of wrongful life suits in J. Feinberg. Wrongful Life moral value of parents’ autonomy. What we are denying is that this and the Counterfactual Element in Harming. Soc Philos Policy 1987; 4: value can be any guide to the moral reasons parents have when they face 2008 The Authors. Journal compilation 2008 Blackwell Publishing Ltd.
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reproductive choice. Prospective parents may ask There may be good grounds to adopt this claim as a genetic engineers to introduce into their embryos supplement to PB. After all, PB leaves open the possibil- combinations of genes that correspond with their ity that, in some unfortunate cases, even the best pro- particular conception of the good life. Yet they will spects will fall below a minimal threshold. Those who acknowledge the right of their fellow citizens to make think that parents should not bring a child to life in such circumstances may want to also adopt the MinimalThreshold Constraint, indeed, as we suggested above, Liberal eugenics is a permissive view that allows to even give it a binding legal force.
parents to select their children according to their own Even if we reject the Minimal Threshold View, we may conception of the good. As a moral view, it places too think that aiming at the best is too strong. Why not aim few constraints on which children parents should select.
to have children who will have a good enough life? Those Parents could select according to any conception of the who defend this view are endorsing a satisficing version of good, no matter how implausible. We clearly need some- thing stronger than autonomy, liberty or liberal eugenicsto guide procreative choice. But PB may seem to impose The Satisficing View. If reproducers have decided to
a very demanding norm on reproducers. PB, after all, is a have a child, and selection is possible, then they have a maximizing principle. Some people find it easier to accept significant moral reason to select one of the possible a principle that only instructs parents not to have chil- children they could have who is expected to have a dren who will endure great suffering and hardship: good enough life over any that does not; they have nosignificant moral reason to choose one such possible The Minimal Threshold View. If couples (or single
reproducers) have decided to have a child, and selec-tion is possible, then they have a significant moral Why prefer this principle to PB? Recall some of the reason to select one of the possible children they could constraints we have placed on the pursuit of the most have who is expected to have a life worth living over advantaged child. Parents’ procreative choices should not any that does not; they have no significant moral involve excessive burdens and sacrifices. This means that reason to choose one such possible child over any parents may sometimes have an overall reason to aim at less than the best. Another limit is epistemic. Parents mayhave reasonable doubts about what is likely to make a It is hard to see, however, what could support such a child’s life go best, and may therefore prefer to aim at view, once it is allowed that parents have reasons to care securing only certain agreed primary goods – health, about the expected well-being of their future children.
intelligence, self-control, sociability, and the like. It will Many would agree that parents would be wrong not to often be easier to be confident that a condition will make wait before conceiving a child if this will mean that the a life go better than that it will lead to the most advan- child they bring into existence has greater endowment.
The Minimal Threshold View couldn’t be the whole truth The claim that we should select the best option avail- about the ethics of procreative decisions.
able is simply the application of a general constraint on It’s important to distinguish the Minimal Threshold practical reason, a constraint that applies to both moral View, a claim about selection, from a separate claim and prudential choice. This constraint follows from the about considerations that are reasons not to reproduce familiar conceptual connection between goodness and rational choice. Roughly, we have reason to choose what The Minimal Threshold Constraint on Reproduction. If
is good, and we have more reason to prefer what is better.
reproducers cannot choose a child whose life will be If A and B are identical in all regards except one, and A worth living, then they ought not to have a child at all.
is superior in that regard to B, we have a reason to choose 26 A number of authors claim that prospective parents are obliged to 24 N. Agar. 2004. Liberal Eugenics: In Defense of Human Enhancement. select children whose expected well-being is at a level higher than a life Oxford: Blackwell: 6. Agar’s view would be closer to PB if he claimed barely worth living, but significantly lower than the best life possible that prospective parents have positive reason to follow their conception (see B. Steinbock & R. McClamrock. When Is Birth Unfair to the of the good in selecting the most advantaged child.
Child? Hastings Cent Rep 1994; 24: 15–21; F.M. Kamm. 1992. Creation 25 Glover defends this view in op. cit. note 9, pp. 52–53, 54–60. Glover and Abortion. Oxford: Oxford University Press: 132–133.) These views however believes that, because it is hard to determine when a life is not can be interpreted as variants of the Satisficing View or as lying between worth living, what parents should aim at is to have only children with that view and the Minimal Threshold View. On either reading, they are ‘a decent chance of a good life’ (p. 63).
subject to our objections to these views.
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A. Once it is accepted that the well-being of future chil- negative affect, or the severe impairment in social skills dren should have weight in our deliberation, then if we have two embryos which are in all respects the same, As means of selection become safer and our ability to except that B has a state which will reduce her expected use them to select non-disease characteristics increases, well-being, then we have a significant reason to choose A.
we believe that PB will require most reproducers to select The satisficing principle, however, holds that if one has the most advantaged child unless doing so is predicted to a choice between embryo A and embryo B, both of whom lead to a very significant loss of well-being to existing would have lives that would be well worth living, but A people. As we have repeatedly emphasized, although PB can reasonably be expected to have a significantly better is not an overriding obligation it is a significant reason.
life than B, then this latter fact provides no moral reason to choose A rather than B, even when there’s no reason We saw earlier that commonsense intuitions seem to be stronger when reproductive choices aim to prevent a child This implausibility is clearest when there are no oppos- who will suffer from coming into existence than when ing reasons. When there is absolutely no cost to selecting they aim to create a child with very good prospects. This the best option, it is hard to see how it could be reason- might suggest that what should matter in selection is not able wilfully to select, say, the fifth best option, or even to the positive promotion of well-being but rather the pre- allow the fifth best to be chosen by lottery.
vention of serious suffering and loss of opportunity. On PB, of course, makes an even stronger claim. It claims this view, reproducers should not select children who can that there is significant reason to select the most advan- be expected to endure significant suffering or hardship taged child. When there is some cost or risk in such a even if these children are also expected to have a high choice, these different reasons compete. The examples we overall level of well-being. This would give us the follow- considered so far are ones where there are no such com- peting reasons. Such examples help demonstrate the truth The Prevention of Harm View. If reproducers have
of PB but shed little light on its strength when weighed decided to have a child, and selection is possible, then against other considerations. Although, as in other areas, they have a significant moral reason to select one of the there may not be any simple recipe that tells us how to possible children they could have who is expected to weigh these against each other,28 we believe that unless experience least suffering or limited opportunity or the risks and costs are substantial, parents ought to select serious loss of happiness or good compared to the the most advantaged child. If a couple is already employ- ing IVF and genetic testing is safe, they should employtests to evaluate the genetic potential of their embryos Conditions such as depression clearly make a life and choose on the basis of it. And although women worse, sapping its very life blood. According to both this should not undergo risky fertility treatments in order to view and to PB, parents have reason to select children less be able to select an embryo whose expected well-being is disposed to depression. Manic depression, however, is only negligibly greater than that of the child they expect more complex and has been associated with great creativ- to have naturally, we believe that PB instructs women to ity and productivity. The Prevention of Harm View might seriously consider IVF if natural reproduction is likely to require selecting against manic depression if the lows are lead to a child with a condition that is expected to reduce well-being significantly, even if that condition is not a The genetic component in these conditions is reviewed in C.M.
Freitag. The genetics of autistic disorders and its clinical relevance: a disease. This is clearest if natural reproduction is likely to review of the literature. Mol Psychiatry 2007; 12: 2–22; and D. Lykken result in a child disposed to, say, clinical depression or & A. Tellegen. Happiness is a stochastic phenomenon. Psychol Sci. autism. But we believe that reproducers also have strong 1996; 7: 185–189. Lykken and Tellegen estimate that the heritability of reasons to seek to prevent even an innate tendency to the stable component in subjective well-being approaches 80%.
30 This is one way of interpreting what Buchanan et al. op. cit. note 9, 27 The rationality of satisficing has been much debated in recent years.
p. 249 call ‘Principle N’. For an unambiguous defence of such priority, See for example M. Byron, ed. 2004. Satisficing and Maximizing: Moral see S.V. Shiffrin. Wrongful Life, Procreative Responsibility, and the Theorists on Practical Reason. Cambridge: Cambridge University Press.
Significance of Harm. Legal Theory 1999; 5: 117–148, and E. Harman.
28 If one adopts total act utilitarianism, then there may be a simple Can We Harm and Benefit in Creating? Philosophical Perspectives 2004; recipe: the expected well-being of future children is to be directly 18: 89–113. For criticism of such views, see J. Griffin. Is Unhappiness weighed against the expected well-being of existing people. But variants Morally More Important Than Happiness? Philos Q 1979; 29. 114: of utilitarianism that accept a pluralist conception of well-being, and 47–55. As we suggest in note 19, it may be rational for reproducers to forms of consequentialism that recognize values besides well-being, may select an embryo with a less risky future even at the cost of possible also fail to provide a ‘simple recipe’ for weighing different aspects of benefits. In this respect, PB is compatible with giving priority to pre- well-being, or well-being against other values.
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low enough. But some manic depressives endorse their The above principle might instead mean that we should condition, identifying with it, and their lives appear very select future children with the aim of intentionally pro- successful. It is an advantage of PB that it leaves it open moting their expected autonomy. This could take two whether parents have reason to select against manic forms. In one, parents would aim to select children with depression. This is a question for the theory of well-being.
psychological traits that are likely to increase the future Moreover, parents are exposing children to risks of suf- child’s autonomy – traits such as foresight or self-control, fering, hardship and frustration simply by bringing them empathy and sympathy. In another, parents would aim to into existence. If procreative choices were constrained in keep open as many future options as possible for their this way, there could be strong presumptive reasons to abstain from procreation altogether.31 Finally, notice that It seems to us doubtful that having a wider range of the Prevention of Harm View is not the same as giving choices is valuable in itself, independently of its contribu- priority to the prevention of harm. Even if in procreative tion to expected well-being.35 And there seems no reason choices prospective parents ought to give greater weight to keep open options that will lead to misery and misfor- to preventing suffering and hardship, it hardly follows tune, or to keep open trivial options at a general cost to that they ought to give no weight to selection of non- expected well-being. But if respect for future autonomy is disease characteristics that will result with a life with understood to benefit a person because it contributes to her well-being, then it is entirely compatible with PB.
Consider finally the following procreative principle: Some philosophers believe that autonomy is in itself goodfor a person. An option that is in itself independently Respect for the Autonomy of Future Persons. If repro-
good would be better if chosen by the child herself rather ducers have decided to have a child, and selection is than chosen in advance by her parents. Even those who possible, then they have a significant moral reason to doubt that autonomy is intrinsically good, would almost aim, not to maximise expected well-being, but to maxi- invariably admit that autonomy is instrumentally good.
A child is likely to form his own conception of the good Some anti-selectionists believe that we shouldn’t deter- life – a range of values, projects and desires – and this mine the genetic endowment of future children out of conception will itself at least partly determine what would respect for their future autonomy.32 Sometimes this is count as a good life for him. And as he grows, that future expressed as respecting a child’s right to an open future.33 child will often know better than his parents what would However, it makes little sense to think that we limit a best contribute to his life. These claims all fall squarely future child’s autonomy by selecting its genetic endow- within the scope of PB. All they do is add to PB a further ment (especially increasing talents and capabilities), but respect it by leaving the formation of that endowment to The moral stain of the atrocities committed in the natural processes. Whether or not we select our children name of eugenics in the previous century has distorted or leave things to chance, some future options will be recent debate about procreative ethics. Although PB closed to them or made more difficult, and other options and the procreative principles we have considered here will open or be made easier.34 And it is likely that children bear little resemblance to the collectivist, coercive and with greater talents and health will have more options often racist projects of 20th century eugenics,36 most supporters of genetic selection have tended to proceedgingerly, defending views that are unnecessarily weak.
We have argued that PB is superior to these competing principles of procreative selection – the norms implicit Such an anti-natal conclusion is reached by D. Benatar. 2006. Better Never to Have Been Born. Oxford: Oxford University Press. We doubt in commonsense morality, as well as general constraints that such counterintuitive conclusions were intended by Buchanan et al.
on rationality, instruct us to aim to have the most 32 J. Habermas. 2003. The Future of Human Nature. Cambridge: Polity Press.
33 D.S. Davis. Genetic Dilemmas and the Child’s Right to an OpenFuture. Hastings Cent Rep 1997; 27: 7–15. Notice that although we arediscussing the view that reproducers have reasons to maximize theexpected autonomy of future children, our remarks apply with equal 35 See G. Dworkin. 1988. The Theory and Practice of Autonomy. Cam- force to a satisficing version of this view, which would only claim that bridge: Cambridge University Press: ch. 5.
there are reasons to provide future children with a good enough range of 36 For discussion, see Buchanan et al. op. cit. note 9, chapter 5; J. Glover. 1998. Eugenics: Some Lessons from the Nazi Experience. In 34 Robertson, op. cit. note 22; J. Savulescu. Is There a Case in Favour of The Future of Human Reproduction: Ethics, Choice and Regulation. Predictive Testing of Children? Bioethics 2001; 15: 26–49.
J. Harris & S. Holm, eds. Oxford: Clarendon Press: 55–65.
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Objections to maximizing moral principles It has indeed seemed to many that morality couldn’t require us to give up our personal projects and special ties In technical terms, PB is a maximizing principle. This has to family and friends in order to increase the welfare of suggested to some that it must be vulnerable to standard total strangers.39 Reasons of PB, however, are continuous objections to such principles. In this section we’ll consider with familiar parental duties governing the spacing of our such objections. But first let us correct the mistaken children and the circumstances under which we should impression that because PB is a maximizing principle, have them. It is not uncommon to hear the criticism, it must belong in a consequentialist ethical theory. Both ‘They should have waited to have children.’ To the extent consequentialists and the vast majority of their oppo- that parents have reasons to care about the expected nents agree that there is moral reason to promote the well-being of their future children, these reasons can be good. Where they differ is over whether there are moral seen as extensions of parents’ special relations to their constraints that limit the promotion of the good. In fact, own children, not as the external demand of an impartial within total act utilitarianism, PB could not be an inde- pendent moral principle but only a label for one kind of Second, it is doubtful that the choice itself could be value that needs to be weighed in utilitarian deliberation.
described as a burden. If parents believe, or would believe Indeed, the right act for a total act utilitarian will some- if they had reflected on the available information, that times be to create a child with prospects for a poor life, child A will have a better life than child B, how can it be if this will lead to a higher aggregate level of wellbeing.
a burden to select A? There is an important disanalogy For example, it might be better for some parents to have here from many acts that promote the well-being of exist- a dull, lazy child than a highly intelligent and challenging ing children. In many cases, the more an act promotes child who herself would have a better life. PB may often well-being (e.g. taking a child to speech therapy), the clash with total act utilitarianism, although it is compat- greater its cost (in terms of time and money). Now ible with other forms of consequentialism.
whether parents should undergo IVF in order to select There is nothing in the PB that makes it incompatible the most advantaged child does depend on the costs – with non-consequentialist moral theories. It is compat- financial, emotional and physical. But in those cases ible, for example, with respecting persons as ends in where couples are already undergoing IVF for infertility themselves. We are not treating a future child merely as a or risk of genetic disorder, there are no significant further means when we aim to have the child who will enjoy the costs to selecting the most advantaged child compared to most advantaged life – reasons of PB are not reasons of selecting a child without Down Syndrome.41 If parents parental self-interest. And PB is also an extension of one have already committed themselves to spending a certain central parental virtue: concern for the well-being of amount on their child’s education, what further burden one’s children. As such, it is equally compatible with do they bear in selecting the better school out of several virtue ethics.37 Furthermore, we have argued that reasons similarly priced options? Perhaps what is meant is rather of PB can be outweighed or defeated by other reasons, that raising a child with extraordinary talents may be a and these reasons may be non-consequentialist in origin, burden to normal parents. This may be true in some cases. But whether and when can only be settled Even if PB is compatible with non-consequentialist views, it might still be vulnerable to familiar objections Another objection to maximizing principles is that they to maximizing moral principles. For example, several are self-defeating. If all a person aims to do is promote authors have claimed that PB is too demanding – that it her self-interest, then she may find this aim self-defeating.
places too stringent a burden on parents. As Glover She may have a better life precisely by being concerned about many things other than her self-interest. Directly There is something to be said for avoiding the intru-sion of too many or too stringent moral obligationsinto an intimate personal decision. There is a case 39 See Bernard Williams’s contribution to B. Williams & J.J.C. Smart.
against placing additional moral burdens on people 1973. Utilitarianism, For and Against. New York: Cambridge University having children, a case for simply welcoming whatever See D. Wasserman. The Nonidentity Problem, Disability, the Role Morality of Prospective Parents. Ethics 2005; 116: 132–152.
41 This was not true in the past. In order to have even limited control 37 See R. McDougall. Acting Parentally: An Argument Against Sex over one’s child’s genetic make-up, one would have had to choose a Selection. J Med Ethics 2005; 31: 601–605.
partner according to their genetic make-up. This would have often 38 Glover, op. cit. note 9, p. 51. See also Sandel, op. cit. note 1.
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and exclusively seeking happiness may make a person more empathetic and less aggressive. And in so far as miserable. Couldn’t this be said of seeking to have the such joint action has significant social costs, these costs would provide independent reasons for restricting paren- Notice first that this is not an objection to the truth of PB but to using it as a direct guide to action. In any case,this objection couldn’t plausibly apply to the promotionof our biological and psychological potential and abili- PART III. AN APPLICATION:
ties. How can the capacity to remember things better, PROCREATIVE BENEFICENCE
concentrate longer, be less depressed, or better under- AND DISABILITY
stand other people’s feelings have the effect that one willbe less likely to achieve the good life? It may be self- Existing reproductive medicine already offers means defeating in some circumstances to aim directly at achiev- either to prevent the birth of children with many disabili- ing the good, but it is surely sensible to aim directly at ties or intentionally to bring into existence children with achieving the potential to be able to realize the good. If it disabilities. The most heated debates in procreative ethics is not self-defeating to alter the educational environment have consequently revolved around the question of dis- to maximize our children’s potential and opportunities, ability. According to a recent survey, deliberate selection why is it self-defeating to intervene more directly in their of children with conditions such as deafness or dwarfism is not uncommon: 5% of 190 of PGD clinics surveyed Parents who obsess about their child’s well-being and in the US have allowed parents to select embryos future accomplishment may indeed make their child less with conditions commonly taken to be disabilities.45 rather than more happy or accomplished. But this has In one famous example, Sharon Duschneau and Candy nothing to do with the act of selection itself. Selecting the McCullough, a deaf lesbian couple, deliberately created a best is not, in this way, self-defeating, as compared to deaf child by using sperm from a deaf male donor.46 letting nature or chance take their course. It is subsequent Many disability advocates believe that such procreative attitudes to the child that may cause such damage. But if choices are morally permissible. Many others believe that so, then this is no real objection to PB.43 It is an objection they are morally wrong and that, indeed, we ought to use to certain styles of ‘hyperparenting’.44 reproductive technology to prevent disabled children There is one way in which PB may be self-defeating.
from coming into existence. Any adequate account of One factor that can influence how well a person’s life goes procreative ethics must address these issues. It might is her position on a range of positional goods – how she seem however that PB, a claim about the selection of ranks compared to others on attributes such as intelli- the most advantaged children, contributes little to this gence and height. Not everyone can be the most intelli- debate. In this final section we shall argue that PB pro- gent or the tallest. But, to the extent that genetic selection vides a better approach to the question of disability than is available to many reproducers, then whether and to the competing procreative principles.
what degree a given feature is likely to benefit their future Many believe that it is morally wrong to create a dis- child will thus often depend in part on other parents’ abled child intentionally. Others believe an even stronger genetic choices. Such coordination problems pose a claim, that there are strong reasons to try to prevent genuine difficulty. But parents already face such difficul- disabled children from coming into existence. This stron- ties with many decisions they make with respect to exist- ger view might be supported by two procreative prin- ing children. Moreover, many such goods are not purely positional. The world and the lives of the people in itmight be better if everyone were funnier, more intelligent, 45 Baruch et al. op. cit. note 6.
42 For this objection, see Parker, op. cit. note 9.
46 See M. Spriggs. Lesbian Couple Create a Child Who is Deaf Like 43 Similar remarks apply to Glover’s worry that in aiming to select the Them. J Med Ethics 2002; 28: 283. For an example of a couple who used best we ‘substitute the mindset of quality control for the cheerful moral IVF to select a child without a gene that causes hereditary deafness, see anarchy of the free-range approach’ (op. cit. note 9, p. 51.) J. Kelly. 2002. Chosen One: Designer Baby to Have Perfect Hearing.
44 Sandel seems to conflate the two in op. cit. note 1. If selection on the Herald Sun (Melbourne). September 21: 1–2.
one hand and accepting care or love on the other could were really 47 The weaker view relies on the doing/allowing distinction. It forbids inextricably linked, then it seems to follow that instead of being able to reproducers from actively selecting disabled children but permits them choose a partner freely, we would be better off if marriages were to allow such children to be born. Of course those who believe that arranged by our parents or society, or perhaps better, the outcome of a selection itself is morally forbidden reject selection both for and against 2008 The Authors. Journal compilation 2008 Blackwell Publishing Ltd.
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The Selection Against Disability (SAD) View If repro-
Disability A stable intrinsic property of subject S that
ducers have decided to have a child, and selection is deviates from the normal functioning of the species to possible, then they have a significant moral reason to select, of the possible children they could have, one of In normative inquiry, however, we are interested in a those who are expected to be non-disabled.
concept of disability that has an internal connection with norms or values. Some people believe that the speciesnorm does have such a connection. They believe that The Disability Constraint on Reproduction. Reproduc-
simply because a condition deviates from normal func- ers should not knowingly bring into existence a dis- tioning, this condition makes a person’s life go worse, abled child. If they cannot bring into existence a child and therefore gives reasons to avoid, regret and correct it.
who is expected to be normal, then they ought not to This view is not defensible. Deviation from the biologi- cally or statistically normal couldn’t have such a norma- The Disability Constraint is an extreme view.
tive significance in itself. Loss of hearing with old age is Whereas the SAD View at least seems to allow that certainly consonant with the biological and statistical reasons to prefer a non-disabled child might be overrid- norm, but hardly less disabling for that. Around 34 per den in some circumstances, the Disability Constraint cent of all men aged 40–70 have some erectile dysfunc- claims that it is never permissible to knowingly bring tion, which is a part of normal ageing. As a result, 20 into existence a disabled child. It is hard to defend this million men worldwide use Viagra.49 Many men are not view. A plausible constraint on reproduction is The satisfied with species typical normal functioning.50 Minimal Threshold Constraint. But that constraint does If we adopted the Species Norm account of disability, not support the Disability Constraint. The lives of the then the SAD View would be false. There is generally no vast majority of disabled people are not merely worth reason to base decisions about which children to have on considerations of whether they deviate from the species In any case this is a claim about reproduction, whereas norm. Deviation from such a standard matters only when PB is a claim about selection. Does PB at least support it is likely to affect the quality of a life – by making it the SAD View? PB gives reasons to select the most advan- worse or, sometimes, better. The Species Norm account taged child out of the possible children a couple can thus offers us little assistance in answering normative select. Given that the most advantaged child might still be questions. To answer such questions, we would need to disabled, PB does not imply the SAD View. But PB might relate facts about species norms to facts about well-being.
still imply a related view. It might give reasons to select a Worse, since in its everyday use the concept of disability non-disabled child when this is possible. And it might implies a negative evaluation, adopting a Species Norm therefore give reasons not to seek intentionally to bring account of disability is likely to confuse, rather than into existence a deaf child when it is possible to have a hearing one. Whether PB has these implications depends Our revisionary account of disability will thus focus precisely on what matters for normative inquiry: on thetendency of a condition to affect how well a life goes. Ouraccount, we believe, largely corresponds to everyday use.
Like other revisionary accounts, it sometimes departs from it. This, however, is not a problem. When ouraccount of disability departs from everyday usage in In its everyday use, the word ‘disability’ is a messy andmisleading mixture of descriptive and evaluative ele- 48 For such a view, see Buchanan et al., op. cit. note 9. As it stands, this ments – it typically expresses a negative valuation and is above definition will not do. If someone has extraordinarily good vision used to refer to conditions considered detrimental, but or memory, she also deviates from normal functioning. So we need anasymmetry between two kinds of deviations, negative and positive. We these conditions are often singled out as those that need to talk not just of deviation but of something like pathological or deviate from what is taken to be the standard of nor- defective deviation, however that is to be defined.
49 M.D. Cheitlin et al. ACC/AHA Expert Consensus Document JACC: There are several ways in which we could revise the Use of sildenafil (Viagra) in Patients with Cardiovascular Disease. J Am concept of disability, and different accounts will better Coll Cardiol 1999; 33: 273–282.
50 For further arguments against the normative significance of species match different aspects of the everyday use of the word.
norms, see J. MacMahan. Our Fellow Creatures. J Ethics 2005; 9: Some hold a Species Norm View of disability and define it 353–380 and J. MacMahan. 2002. The Ethics of Killing: Problems at the as deviation from some biological standard: Margins of Life. Oxford: Oxford University Press: 209–228.
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some surprising way, it is our definition, we believe, that disability, although whether it would be wrong to do so captures what matters most for questions in procreative would depend on the overall balance of moral reasons.
ethics.51 In our Welfarist View, a condition is a disability This claim is compatible with the obvious and impor- tant fact that people with disabilities can have very goodlives. Biological and psychological disabilities make it Disability A stable physical or psychological property
more difficult to lead a very good life just like being very of subject S that (1) leads to a significant reduction in poor or having little education. But they do not remove S’s level of well-being in circumstances C, when con- opportunity altogether unless very extreme.
trasted with realistic alternatives, (2) where that is In the context of procreative choices, however, what achieved by making it impossible or hard for S to matters is not whether particular disabled people have exercise some ability or capacity, and (3) where the had good lives, but whether parents can reasonably effect on well-being in question excludes the effect due believe that a child with deafness or some other condition to prejudice against S by members of S’s society.
is likely to have a better life than a child without this As we define it, disability is a species of instrumental condition. Consider this analogy. Money, it is said, can’t badness – it is a harmful condition. The notion of a buy happiness. But few would sincerely deny that having harmful condition can be cashed out in different ways.
money is instrumental to having higher well-being.
One natural way is counterfactual: had condition X not Opening a savings account for one’s child is a way of been present, the person’s well-being would be higher.52 promoting his or her expected future well-being.55 It may This comparison, however, must involve a counterfactual still turn out that the money was badly used. It may even alternative that is realistic: not being able to fly or to read turn out, in retrospect, that if the child had been left poor, others’ minds are not plausibly described as disabilities, she would have had a better life. But the fact that such even if possession of such fantastic capacities would make outcomes are possible is hardly a reason not to save our lives go better, just as it is not a misfortune that we do money for a child’s future. The very same point applies to not live to 150, although it would be in a world where this preventing disability. The fact that a condition may in certain cases play a role in increasing overall well-being is Although there are genuine difficulties in identifying irrelevant, unless it can be shown, at the time of choice, an appropriate counterfactual baseline for assessing the that this is the likeliest outcome. In the context of pro- effect of a given condition on a person’s lifelong well- creative choices, the operative concept is that of expected being,54 these difficulties are luckily less pressing in the context of many procreative decisions. When parents arefaced with the choice between a number of possibleembryos, it is clear what possible lives they are compar- Disability is context and person relative ing. PB instructs them to choose, out of these possible As we have defined it, disability is a context and person- future children, the one who is likely to be the most relative notion. What makes it harder to lead a good life advantaged. And this means that, on our account of in one circumstance may make it easier in another. The disability, parents do have reasons not to have a future atopic tendency which leads to asthma in the developed child who is likely to be disabled if they have the option world protects against worm infestations in the undevel- of choosing another who is expected to have less or no oped world. Deafness would be a positive advantage inan environment of extremely loud and distracting noise.
This relativity shouldn’t be surprising. What is intrin- 51 We further develop this revisionary account of disability in sically bad remains intrinsically bad in all possible G. Kahane & J. Savulescu. The Welfarist Account of Disability. In worlds. But, with a few possible exceptions, things Disability and Disadvantage. A. Cureton & K. Brownlee, eds. Oxford: couldn’t be instrumentally bad in all possible worlds.
Oxford University Press (forthcoming).
52 This is a widely held view of harm. See e.g. Feinberg, op. cit. note 21.
They are instrumentally bad only in a given causal 53 See Jeff McMahan’s defence of a ‘realism condition’ as a constraint context. In this respect, the concept of disability is for- on assessments of fortune, op.cit. note 50, pp. 133, 142 and 145ff.
mally similar to the concepts of an obstacle or a danger.
54 We discuss these difficulties further in G. Kahane & J. Savulescu, op. Things are not dangerous absolutely. They are only dan- cit. note 51. They are not unique to our account of disability. They have gerous relative to a person and to a given situation. In been much discussed in tort law (see L. Katz. What to Compensate?Some Surprisingly Unappreciated Reasons Why the Problem Is SoHard. San Diego Law Rev 2003; 40: 1347–53) and in the context of 55 Note that parents can open such a savings account even before attempts to account for the badness of death (see McMahan, op. cit. conceiving a child, with the aim of saving money that would benefit their future child, whoever this child will be.
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order to judge which conditions constitute a disability, we are correct, the treatment would be not disabling but need to predict what the context or environment is likely to be. There is no context-independent answer to thequestion whether we should select hearing rather thandeaf children.
When is disability ‘socially constructed’? The context-relativity of disability is nicely illustrated by the example of colour blindness. Generally this is seen It is often claimed that disability is ‘socially con- as a very mild disadvantage because it has little impact on structed’.58 This claim can mean different things. On the a person’s life. Colour blind people experience the world Social Model, disability can be defined as differently, but they are able to function normally and to Disability A stable intrinsic property of subject S which
discern relevant colours where it matters. Although it (1) deviates from the normal functioning of the species involves some disadvantage, colour blindness constitutes to which S belongs and (2) which tends to reduce S’s a mild disability. But now imagine that some master level of well-being because members of the society to painter became colour blind. Such a person might be which S belongs are prejudiced against such deviation prepared to spend vast sums of money to correct his colour vision. This represents the value of colour visionto that particular person in his context. For such a This account captures one important way in which person, colour blindness might be a severe disability.
some conditions make people’s lives worse – through Another illustration of this context-relativity, as well as unjust treatment. Given that we have deliberately defined of the distance between the Welfarist and the Species the Welfarist View to exclude the effects on well-being of Norm views, is the case of Ashley, a nine-year old from such prejudice, the two views are compatible. Given that Seattle who was born with a condition called static both consciously depart from the everyday use of the encephalopathy, a severe brain impairment that leaves word ‘disability’, it is a terminological matter which best her unable to walk, talk, eat, sit up or roll over. Accord- deserves to keep this label. The Welfarist View, however, ing to her doctors, Ashley has will remain at a develop- better captures what is worth preserving in the existing mental level of a three month old baby.56 In 2004, concept. It refers to an important property of persons Ashley’s parents and the doctors at Seattle’s Children’s that the existing use of ‘disability’ tracks in a rough and Hospital devised what they called the ‘Ashley Treatment,’ misleading manner. We need a way to refer to this form which included high-dose estrogen therapy to stunt Ash- of instrumental badness. And advocates of the Social ley’s growth, the removal of her uterus via hysterectomy Model sometimes go on to claim that all the negative to prevent menstrual discomfort, and the removal of her significance of conditions commonly described as dis- breast buds to limit the growth of her breasts. Ashley’s abilities is due to social prejudice against the abnormal.
parents argue that the Ashley Treatment was intended ‘to improve our daughter’s quality of life and not to conve- There is, however, a qualified sense in which many disabilities could be truly said to be socially constructed On both our Welfarist view and the Species Norm even on our account. Conditions that count as disabilities view, Ashley was born with a severe disability. But their in our sense are only instrumentally bad, and have verdict radically diverge when we turn to the effect in harmful effects only in a given context. In some possible Ashley of the treatment devised by her doctors. On the world, with different social institutions, a condition Species Norm view, the treatment would greatly increase which in our world is a disability might be neutral or even Ashley’s disability – driving her even further from the advantageous. Indeed, in some contexts, having perfect human norm. On our view, in the context of Ashley’s health can be a disadvantage. In Russia in the 1800s, brain impairment, and assuming that the claims made having good health in men meant 15 years’ service in the for the effects of the treatment on Ashley’s well-being army, with a significant chance of being killed. These,however, are only empirical claims, whereas the view that 56 D. Gunther & D. Diekema. Attenuating Growth in Children with 58 See H. Lane. Do Deaf People Have a Disability? Sign Language Profound Developmental Disability, A New Approach to an Old Studies 2002; 9:2 356–379; R. Amundson. 2005. Disability, Ideology, Dilemma. Archives Pediatr Adolesc Med 2006; 160: 1013–1017.
and Quality of Life: A Bias in Biomedical Ethics. In Quality of Life and Human Difference: Genetic Testing, Healthcare, and Disability. D.
These claims are controversial. Our aim here, however, is not to decide Wasserman, J. Bickerbach & R. Wachbroit, eds. Cambridge: Cam- this particular case but to illustrate how the welfarist account sheds light bridge University Press; S.M. Reindal. Disability, gene therapy and eugenics – a challenge to John Harris. J Med Ethics 2000; 26: 89–94.
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disability is socially constructed is usually taken also to cases of biological or psychological change would not have a very specific normative import. It is often taken literally terminate one person’s life and replace her with to imply that it is always society that should be changed another, such change may still threaten to disrupt the to correct disability. In the next section we shall argue psychological unity of a person or undermine her deepest life projects. These considerations, however, do not applyin the context of reproductive choices where we are con- sidering future children, not existing people. Here there isno question of the costs of adaptation to a different set of Whenever there is a mismatch between biology, psychol- senses or capabilities, and there aren’t yet life projects ogy and social or natural environment resulting in a bad life, or even a life that is not as good as it could be, wehave a choice. We can alter our biology, our psychology,or our environment. Which should we change? When it comes to selecting children, we can select children suited to our environment or we can attempt to We can return now to the deaf couple who deliberately alter our environment to suit our children. Some have sought to create a deaf child. The procreative choice of attempted to do the latter. For example, asthma devel- this couple is a good test case for competing procreative ops from an immune response which was originally ben- principles. Their choice already presupposes the moral eficial in protecting us against worm infestations. One permissibility of selection, and the question is only what doctor is attempting to replicate this condition in the moral principle should guide this selection. The means developed world by introducing benign worms into the employed by this couple are relatively uncontroversial.
intestines of asthmatics. But another solution would And deafness is an appropriately controversial condition.
simply be to select children without the predisposition Is the couple’s choice morally defensible? Consider first how PB answers this question. If deafness can be Our own view is that all routes must be considered.
expected to be a disability in our welfarist sense, then PB We have moral reasons to aim to have the most advan- implies that parents have moral reasons to select hearing taged children. But there is no obligation to achieve this children rather than deaf ones. This seems the right end by biological means, or by biological means alone.
answer. However, to get this result on the Minimal In some cases, it is reasonable and practicable to alter Threshold View or the Satisficing View, one would need the environment. But in others, it is going to be difficult to argue that the lives of deaf people are not worth living, to change the modern or natural environment to allow or not good enough. These are not defensible claims. PB all possible people to flourish. For example, it may be makes no such claims. It can acknowledge that the lives most effective to choose children with more melanin of deaf people are good and often very good. And it gives pigment in their skin to protect them from the sun in no weight to claims about deviation from, or conformity areas of high ozone layer damage, rather than attempt- to, the normal. PB doesn’t tell us to prefer embryo A to ing to close the hole in the ozone layer in that area or embryo B because B will be ‘abnormal’ and A will be enforcing sunscreen, coverage of the skin and avoidance ‘normal’. It tells us to prefer A because A is expected to When a given social arrangement is unjust, there will This is a difficult question. To apply our account of be priority to changing society, although it is a fallacy to disability to some condition, we need to conduct two assume that if the lives of people with a certain condition separate inquiries, one normative and one empirical.
would go better in a different social context, then present First, we need to adopt some account of well-being. Then arrangements must always be unjust. But even if a social we need to identify the causal factors that influence a arrangement is not unjust, in some cases social interven- person’s well-being in a certain set of circumstances. It is tion may be less risky or more likely to succeed. When it thus a substantive question, not determined by definition comes to existing people, one consideration in favour of alone, whether the paradigmatic cases of disability in the changing society is that changes to biology or psychologycan endanger a person’s sense of identity or psychological 59 Some people in the deaf community claim that deafness does not unity. At the most extreme case, such changes may reduce well-being because signing is a unique form of communicationthat offers access to a unique culture that can only be fully experienced amount to a change in numerical identity. We do not by the deaf. For these claims to have the relevant force, it is not enough benefit a person if, in order to cure his migraine, we for it to be true that deafness has some benefits. It must also be true that transplant another brain in his skull. But although most these benefits clearly outweigh the costs of deafness.
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The Moral Obligation to Create Children with the best Chance of the Best Life
everyday sense – deafness, blindness, and intellectual sub- normality – are disabilities. We ourselves are inclined to believe most of these are disabilities in the conditions holding at present and in the foreseeable future. But a case needs to be made, and it needs to be made case by case. If a case can be made that deafness is not a disability in our sense – if it can be shown that deafness does not reduce well-being, or at least that in a given context deaf- ness is not expected to be a disability, then PB would not give any moral reason to select against deafness.
CONCLUSION
We have elaborated and defended the Principle of Pro- creative Beneficence, and explored its implications for the question of disability. We have argued that parents have significant reasons to select the most advantaged chil- dren. As we noted at the start, many find this suggestiondisturbing. But it is important to see that when they doso, they are not relying on commonsense morality. Com- monsense morality doesn’t explicitly deny that there are such reasons. It is simply silent on this question. This isn’t surprising, because, until very recently, this question couldn’t be raised. But silence isn’t the same as denial.
And, as we’ve tried to argue, commonsense morality The real controversy should not be about PB, but about its application. In order to aim to have the most advantaged child, we need to form reasonable opinions on difficult questions about the nature of well-being and the good life, and about the weight we should give to theprospects of future children when these compete with other moral considerations. These are questions that some people may prefer to avoid. But these are questions we cannot avoid if we are to make the right procreative Discussion of disability has sometimes taken the form of a sterile debate between those who think that deviation from the species norm or some other standard of normal- ity is intrinsically bad and always merits correction, and those who think the negative consequences of disability are always due to social prejudice. This is not a good way to frame the debate. As we have argued, there is an important element of truth in the social construction view. But its opponents are also partly right given that, in the circumstances obtaining in our world and in the likely future, it would be better if many commonly recognized disabilities were prevented or corrected.
Our Welfarist View side-steps this sterile dispute by breaking the definitional link between disability and normality. This is not only a terminological matter: it 2008 The Authors. Journal compilation 2008 Blackwell Publishing Ltd.
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may help resist the needless stigmatization of both the this is the condition that parents should select. PB is thus disadvantaged and the species-atypical. Our account not open to the objection that it expresses a discrimina- leaves little room for such stigmatization.60 Indeed on our tory and hurtful attitude towards people with species- account, we all suffer from disabilities of various kinds – conditions inherent to our nature which reduce our well- When people object to PB, this might be because they being and make it more difficult to realize a good life.
mistakenly think that it is incompatible with the strong What determines whether there are moral reasons for intuition that parents ought to cherish and love their or against selecting a child with a congenital condition child for who he or she is. But PB is compatible with this such as deafness is factual information about the intuition. It is up to us whether we love our children and expected well-being of such a child, when compared to give all people in society a fair go. This need not be other possible children, not whether the resulting child affected by decisions about selecting which people come could be described as disabled or normal according to into existence. We all vary in our abilities and our dis- some possible definition. According to PB it is sufficient abilities. To a degree, we all suffer from disability. PB that a condition is likely, in our world, to make for a life calls upon us to select the most advantaged children. We with somewhat smaller prospects of well-being to give should aim to reduce disability, but we should also decide parents reasons not to select this condition. By contrast, how we behave towards people as they are, with strengths according to Procreative Autonomy, all autonomous and frailties, abilities and disabilities, desirable and unde- procreative choices are permitted, and on the Minimal Threshold and the Satisficing views a good case could bemade for allowing parents to select children with disabili-ties that are not very severe. These alternative procreative Acknowledgements
principles seem to us to give the wrong answers to these We are grateful to Robert Adams, Nick Bostrom, John Broome, Kim- questions about procreative choice (see table 1).
berlee Brownlee, Roger Crisp, Maria Clara Dias, Brad Hooker, Mary PB is thoroughly unsentimental about the present state B. Mahowald, Jeff McMahan, Derek Parfit, Ingmar Persson, David of things. If parents could increase the prospects of future Wasserman, Ralph Wedgwood, and several anonymous referees forvery helpful comments.
children’s lives by selecting children who are far moreintelligent, empathetic or healthier than existing people, Professor Julian Savulescu holds the Uehiro Chair in Practical Ethics at
then PB instructs parents to select such future children. In the University of Oxford, and is the Director of the Oxford UehiroCentre for Practical Ethics. His areas of research include the ethics of comparison to such possible future persons, most existing genetics, neuroethics, research ethics, especially the ethics of embryo persons may count as suffering from disability. And if the research, new forms of reproduction, including cloning and assisted prospects of future children in some future circumstances reproduction and medical ethics, including end of life decision-making, would be improved if they had a condition that, in our resource allocation, consent, confidentiality and decision-making present environment, counts as a disability, then, again, involving incompetent people. Most recently, he has been working onthe ethics of enhancement.
Dr Guy Kahane is Deputy Director of the Oxford Uehiro Centre for
It is often objected that, given existing racial prejudices, PB implies Practical Ethics, Faculty of Philosophy, University of Oxford, and that mixed race couples might have a reason to have children with Fulford Junior Research Fellow at Somerville College, Oxford. Kahane lighter skin because having darker skin is socially disadvantageous. But is co-editor of Wittgenstein and His Interpreters (Blackwells, 2007).
when these parents consider the question only from the perspective ofthe good of their future child, then it is no objection to PB that, in theseunjust circumstances, there is a reason to prefer the fair skinned child.
We often have to make compromising choices in unjust circumstances, 61 For this ‘expressivist objection’, see A. Asch. 1989. Reproductive including choices about the good of our children. The same problem Technology and Disability. In Reproductive Laws for the 1990s.
would come up when choosing to send their child to a mixed race state S. Cohen & N. Taub, eds. Clifton, N.J.: Humana Press: 69–124.
school or a white private school. But this isn’t to say that parents ought 62 As Kamm points out, we normally see no tension between seeking to select the fair skinned child. The reasons given by PB can be defeated particular attributes in a future partner and our love for a particular or outweighed by other moral reasons. Many would say that they would person, regardless of their attributes, once we have already begun a be defeated in this case. Parents shouldn’t choose the fair skinned child relationship with them (F. Kamm. Is There a Problem With Enhance- because of the expected prejudice. It’s better to change pernicious atti- ment? Am J Bioeth 2005; 5: 5–14). The case of genetic selection seems no tudes than to reinforce them through capitulation.
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