There are many arguments from many sides which purport to give reasons for limiting access to reproductive technologies and procedures which may facilitate the enhancement of individuals or permit illness, impairment, or disability to be removed or minimized. The issue is whether or not these arguments point to dangers or harms of sufficient seriousness or sufficient probability or proximity to justify the limitation on human freedom that they require.
One of the presumptions of liberal democracies is that the freedom of citizens should not be interfered with unless good and sufficient justification can be produced for so doing. The presumption is that citizens should be free to make their own choices in the light of their own values, whether or not these choices and values are acceptable to the majority. Only serious real and present danger either to other citizens or to society is sufficient to rebut this presumption. If anything less than this high standard is accepted, liberty is dead.
This presumption is sometimes expressed as saying that citizens should enjoy the maximum liberty which is compatible with a like liberty for all. This way of putting the liberal presumption acknowledges that one legitimate limitation of the liberty of the individual is where its exercise limits the liberty of others, or threatens others with significant harm.
The alternative to a presumption of liberty is what John Stuart Mill2 called the “tyranny of the majority.” To avoid this tyranny, the presumption in favor of liberty can only be rebutted by showing that the exercise of liberty for some either infringes the like liberty for others, or causes real and present dangers of significant harm either to individuals or to society. It is not enough that others are made uncomfortable by its exercise, nor that they do not like it, nor that they find it repellent.
Upholding liberty, safeguarding a free society, is not cost free. One of the costs is that citizens must be prepared to accept that others must be free to do things that they themselves would not do, would not wish to do, and even things that make them uncomfortable or which they find repugnant. The liberty to do only those things of which the majority approve is no liberty at all.
Freedom of religion and freedom of conscience are good litmus tests here. Since for all monotheistic religions there can be only one true god, it follows that all nonbelievers are not only mistaken but heretical. To protect their souls, or to protect the one true faith, or to avoid offense to God, infidels should be suppressed. That we do not burn heretics is part of our commitment to freedom and to democratic values. Equally, if I judge you to be seriously morally wrong I must think you should not do what is wrong. But unless I can also show that what you propose to do, or are doing, is harmful to others or society, then a commitment to liberal democratic values means that I must leave you room to differ from me. What consenting adults do in private, and particularly what they do to themselves, is (almost always) their own affair. The exceptions must establish serious harm to others or society.
The burden of proof is not on those who defend liberty but on those who would deny it.
In most democracies (though not all) there is a presumption in favor of liberty. As Joel Feinberg put it:
Whenever a legislator is faced with a choice between imposing a legal duty on citizens or leaving them at liberty, other things being equal, he should leave individuals free to make their own choices. Liberty should be the norm; coercion always needs some special justification.
It is legitimate for the state to prohibit conduct that causes serious private harm, or the unreasonable risk of such harm, or harm to important public institutions and practices. In short, state interference with a citizen’s behavior tends to be morally justified when it is reasonably necessary (that is, when there are reasonable grounds for taking it to be necessary as well as effective) to prevent harm or the unreasonable risk of harm to parties other than the person interfered with.3
Such a presumption means that the burden of justifying their actions falls on those who would deny liberty, not on those who would exercise it. If this is right, the presumption must be in favor of the liberty to access reproductive technologies and other means of founding families unless good and sufficient reasons can be shown against so doing.
Thus, those who would exercise reproductive liberty do not have to show what good it would do; rather, those who would curtail freedom have to show not simply that it is unpopular, or undesirable, or undesired, but that it is seriously harmful to others or to society and that these harms are real and present, not future and speculative, for if they were not, the presumption in favor of liberty would be at risk whenever imaginative tyrants could postulate possible, but highly unlikely, future harms.
It should go without saying that a right to reproductive liberty is not an entitlement to the cooperation of anyone in the exercise of that right, in the sense that if I have a right of reproductive liberty that does not mean that you (my desired sexual partner) or you (my physician) or you (my fertility expert) must necessarily cooperate with me in my pursuit of a family. Rather, it means that neither the state nor professional organizations, nor advisory or regulatory bodies may legitimately prevent any of you from willingly cooperating with me if that is what you choose to do. In short, it means that such cooperation must be neither illegal nor prevented in other ways, for example, by prohibitively costly taxes or prohibitively onerous administrative procedures.
But more than being a simple exercise of liberty or personal preference, reproductive liberty has a serious claim to be a dimension of a fundamental human right. If it involved the exercise of a bare preference, like drinking coffee or playing tennis, its free exercise would still be a fundamental entitlement. However, if it can be shown to involve more than an assertion of an entitlement to exercise freedom of choice, but that it also involves the claim to exercise a choice that is part of a fundamental or basic human right, then the arguments against its exercise must be proportionately stronger and the harms that are claimed to result from its exercise must be proportionately greater. I believe that reproductive liberty has a good claim to be part of such a fundamental right.
As Ronald Dworkin has persuasively argued, making use of the distinctions between liberty as license and liberty as dignity or liberty as a bare freedom and liberty as a basic right:
If freedom to choose [a good] is simply something that we all want, like air conditioning or lobsters, then we are not entitled to hang on to these freedoms in the face of what we concede to be the rights of others to an equal share of respect and resources. But if we can say, not simply that we want these freedoms, but that we are ourselves entitled to them, then we have established at least a basis for demanding a compromise.4
Dworkin has defined reproductive liberty or procreative autonomy as “a right to control their own role in procreation unless the state has a compelling reason for denying them that control.”5
Julian Savulescu gives a classic twist to arguments about reproductive liberty, suggesting that the core idea derives from an element in John Stuart Mill’s defense of liberty, which highlights the crucial role played by the freedom to experiment. Savulescu sets the idea out thus:
Reproduction should be about having children who have the best prospects. But to discover what are the best prospects we must give individual couples the freedom to act on their own value judgement of what constitutes a life of prospect. “Experiments in reproduction” are as important as “experiments in living” as long as they don’t harm the children who are produced. For this reason, reproductive freedom is important. It is easy to grant people the freedom to do what is agreeable to us; freedom is important only when it is the freedom for people to do what is disagreeable to others.6
I have argued that the key idea of reproductive liberty is surely respect for autonomy and for the values which underlie the importance attached to procreation.7 These values see procreation and founding a family as involving the freedom to choose one’s own lifestyle and express, through actions as well as through words, the deeply held beliefs and the morality which families share and seek to pass on to future generations.
Implicit in my defense of reproductive liberty and, I believe, in that of others such as Dworkin and Savulescu is the idea that such liberty must extend to the use of technology and methods of reproduction not envisaged by Adam and Eve. The legal theorist Antje Pedain has made this implication explicit, and elaborates the argument that I have failed to provide:
Harris insists that human rights extend to the use of new technologies which expand our powers, options and ability to affect another person’s fate and condition in ways and by means which were previously unknown.
While it initially appears that this assumption might require some argument, on reflection this is not so. Technical advances often change the way in which we exercise our rights and freedoms, and thus broaden the practical scope of these rights. Freedom of movement now extends to moving around by car or plane, and not just by foot, boat or bike, and may tomorrow encompass flying to Mars in a rocket. Freedom of speech now extends to the distribution of newspapers, television, and Internet chatrooms, and not just to speaking at public assemblies and the like. If fundamental rights and freedoms were not capable of protecting new ways of exercising them, their scope of application would shrink over time in that, with the advances of technology, the right in question would only cover some, instead of all instances of exercising the protected activity. The only way to prevent such a gradual erosion of fundamental rights and freedoms is to expand their range of application along with the changes of technology.
Consequently, Harris is right in saying that the presumption of liberty applies not only to procreative techniques that achieve outcomes which, if circumstances were different, sexual procreation could achieve, but also to the use of techniques which may eventually enable prospective parents to achieve outcomes beyond what is possible by “natural” sexual procreation (for instance, the exchange of single defective genes for nondefective ones in embryos, and the creation of embryos by cloning or by combining genes from more than two existing human beings). Any restriction of this liberty requires a sufficiently weighty reason, and it is in this context that the important aspects in which the new forms of exercising a fundamental right differ from the ones which were previously known can and must be taken into account.8
Now of course freedom of movement did not extend to moving about by car before cars were invented. However, the scope and limits of basic freedoms, like freedom of speech and of movement, are not settled by the means of movement or the modes of expression current at particular moments in history. Rather, they can only be established by reflection upon the point and purpose of protecting such rights.
Ronald Dworkin insists that
[t]he right of procreative autonomy follows from any competent interpretation of the due process clause and of the Supreme Court’s past decisions applying it.… The First Amendment prohibits government from establishing any religion, and it guarantees all citizens free exercise of their own religion. The Fourteenth Amendment, which incorporates the First Amendment, imposes the same prohibition and same responsibility on states. These provisions also guarantee the right of procreative autonomy.9
The point is that the sorts of freedoms which freedom of religion guarantees—freedom to choose one’s own way of life and live according to one’s most deeply held beliefs—are also at the heart of procreative choices. Similarly, we must ask what freedom of movement or freedom of speech as fundamental rights are designed to do. It is not that moving and speaking are by themselves fundamental (although they are of course important), rather that they are essential for the exercise of the “freedom to choose one’s own way of life and live according to one’s most deeply held beliefs”; they are in short essential for a moral and political life.10
And Dworkin concludes that
no one may be prevented from influencing the shared moral environment, through his own private choices, tastes, opinions, and example, just because these tastes or opinions disgust those who have the power to shut him up or lock him up.11
Thus, it may be that we should be prepared to accept both some degree of offense and some social disadvantages as a price we should be willing to pay in order to protect freedom of choice in matters of procreation.12
The nub of the argument is that
[t]he right of procreative autonomy has an important place … in Western political culture more generally. The most important feature of that culture is a belief in individual human dignity: that people have the moral right—and the moral responsibility—to confront the most fundamental questions about the meaning and value of their own lives for themselves, answering to their own consciences and convictions.… The principle of procreative autonomy, in a broad sense, is embedded in any genuinely democratic culture.13
Thus, the freedom to access reproductive technologies and indeed enhancing technologies or procedures is at the very least protected by the democratic presumption. Where these procedures are part of reproductive decision making they may well be a dimension of a fundamental of basic human right already established and widely recognized.
Either way, the burden of proof is not on those who would exercise this liberty or right to enhancement to show what good it does; rather, it is on those who would limit it to show how and to what extent its denial is necessary to protect either the exercise of a like liberty for all or is required to protect others or society from real and present harms or dangers. If, as I have argued, we also have a positive moral obligation to enhance others if we can do so without compromising our own lives (or those of third parties or society) unduly or disproportionately, then again the freedom to do what we ought to do is one that any just and ethical society should grant.
Whether or not this freedom should be publicly funded is of course a separate question. What is clear is that it should not be curtailed by law, regulation, or intimidation.
Everything we do today which has long-term consequences (which is almost everything we do) in some ways affects future generations.14 There are many specific sorts of obligations we might think of in connection with future generations: not to spoil the environment for them or use up valuable natural resources or leave behind sources of danger like spent nuclear fuel, unexploded nuclear weapons, or other dangerous pollutants, and obligations concerning their genetic inheritance. All of these are part of our general obligation not to harm those who come after us.
There are two standard ways of bringing about harm. One is by using what have been called “positive actions” and deliberately changing things so that harm results. The other equally effective way is by deliberately leaving things as they are, knowing that harm will result—using so-called “negative actions.”15 The idea that there is no significant moral difference between acts and omissions with the same consequences is sometimes called the “acts and omissions doctrine.” Although once controversial, this view now seems to me incontrovertible.16 It would obviously be as bad, say, to pollute the environment so that the incidence of cancer increased by twenty percent as it would be not to remove a naturally occurring environmental hazard which we could easily remove and the failure to remove which would cause the same degree of harm. Or, it would be as bad for a mother to fail to take a drug during pregnancy that would remove a disabling condition from her child as it would be to deliberately take a drug that would bring about the disability.17
Our obligation not to cause harm to future generations has the same positive and negative faces. We must not act positively so as to cause harm to those who come after us, but we must also not fail to remove dangers which, if left in place, will cause harm to future people. Thought of in this light there is a clear dilemma about enhancement. On the one hand, we must not contemplate enhancements which will adversely affect our descendants. On the other hand, we must not fail to make changes that could be made which will avoid harm to future people or which would benefit them in ways that cannot be achieved unless these enhancements are put in place.
We must in short weigh up the probability of harm occurring as a result of what we do against the probability of harm occurring if we fail to take steps now to prevent its future occurrence. In some cases the dilemma may be acute; we may simply not know enough to be able to make reasonable judgments as to the various probabilities involved. In such cases we should err on the safe side. It is a singular fact that the safe side is always supposed to be the side of inaction or preserving the status quo, although this belief is entirely without foundation.
It is clear that we should not fail to remove a danger which is real, present, and highly probable for fear that there may be some adverse consequence which we have no reason to expect but which might conceivably occur. Equally, we should not withhold palpable benefits to future generations because they cannot consent to them of because they might regret or resent our legacy.
To see the truth of this we should start on familiar territory.
The suggestion18 that it might be wrong to do something to or for children because they are not in a position to consent is simply absurd. If decisions could not be made for children unless and until they could consent to those decisions themselves, they would never grow up not to be children. Indeed, they would not live long at all. All sorts of decisions are routinely made for children. Their parents (usually) or guardians or those charged with their care (hopefully) dress them, feed them, talk to them, play with them, hug and kiss and cuddle them, sleep with them, eat with them, travel with them, and educate them. Less unproblematically, they indoctrinate them in religion and other prejudices, expose them to dangers such as carrying them on bicycles, in cars, and on airplanes, cross busy roads with them and sometimes let them cross busy roads or play at the edge of busy roads by themselves, take them for fast food, buy them, or let them eat, or prepare for them, or let them prepare all sorts unsuitable foods rich in cholesterol, sugar, salt, unhealthy fats, etc. Some of these are part of every child’s upbringing. How did we allow this state of affairs to occur?
In medical contexts where the consent of a patient cannot be obtained or is simply unavailable, perhaps because that patient is a child or otherwise supposedly incompetent, or because they are temporarily unconscious, someone else consents on their behalf. This is often called “presumed consent” or “substituted judgment” or “proxy consent.”
I suggest, however, that the reason why it is right to do what presumed consent or substituted judgment or proxy consent seems to suggest in these cases is simply because treating the patient in the proposed ways is in his best interests and to fail to treat him would be deliberately to harm him. It is the principle that we should do as little harm as possible that justifies treating the patient in particular ways.
The justification for treatment is not that the patient consented, nor that she would have, nor that it is safe to presume that she would have, nor that she will consent when she regains consciousness or when, on ceasing to be a child, she becomes competent, but simply that it is the right thing to do, and it is right precisely because it is in her or his best interests.
That it is the “best interests” test that is operative is shown by the fact that we do not presume consent to things that are not in the patient’s best interests, even where it is clear that he would have consented. We do not usually mutilate patients who have expressed strong desire for mutilating operations, for example. That we do not, except where we believe it to be in the patients’ best interests, amputate healthy limbs of patients suffering body dysmorphic disorder19 shows that consent is not sufficient justification for all interventions.
If we do not give beneficial treatment to patients who have refused it, say by advanced directive, we perhaps do not do so because we believe this would constitute an assault and a violation of their will. But it is not a violation of someone’s will, nor is it an assault to give a treatment they have not refused, the withholding of which would constitute an injury.
The reason it is not a violation is not because they have consented in some notional or fictional sense, but because it is the right thing to do. And if we seek the reason why it is the right thing to do the answer is that to fail or omit to do it would injure the patient. It is the infliction of that injury, by act or omission,20 that would constitute the violation or assault.
So where, in medical contexts, we act in the best interests of patients who cannot consent, we do so, I suggest, because we rightly believe we should not harm those in our care or even those whom we could affect by our decisions, and not because some irrelevant person or the law has constructed a consent.
So much for medical contexts. If we consider again the case of profiling babies at birth or for that matter all the other decisions that parents and others make for or on behalf of children, we can see that the best interests test is not really helpful either. This is because, whereas it is in the best interests of children that they are fed, clothed, educated, and many other things by competent individuals whether adult or not, this does not justify any particular decision. Indeed, of all the ways a particular parent may, let us say, choose to feed, clothe, talk to, or travel with a particular child, it is unlikely that any would pass the best interests test and many would scarcely count as in the child’s interests at all.
So, our question then must be: what justifies the imposition of a “best interests” criterion—as, for example, in the case of a decision to consent on a child’s behalf to an appendectomy or to dental care, or to take a child in a baby seat on a bicycle or to McDonald’s for lunch or to the clinic for an MMR vaccine? The latter is of course added to the list because whereas MMR vaccination is in the public interest because of herd immunity and the “free-rider” effect, it is unlikely to be in the interests of any particular child to be subjected to even the remote risk involved in MMR21 in a context where most children are being vaccinated. The answer seems to be “nothing.” In other words, there really is no feature of decision making on behalf of children which justifies or rather requires the imposition of a “best interests” test rather than of simply a requirement that the decision taken on behalf of children must not be grossly against their interest or manifestly dangerous. Here the standards of danger must be pretty high or fatty foods and bicycle rides in city traffic would be permanently off the menu.
The bottom line seems to be that if we are to permit parents or guardians care and control, in short, if family life is to be protected, huge latitude must be allowed to parents in decision making on behalf of children. There seems to me no reason why that latitude should be denied in the case of genetic testing or profiling at birth or in childhood. Add to this the powerful reasons on both sides of the argument to add to the lack of clarity and the safe side must surely remain with parental discretion.
An important argument made in relation to a child’s “right” not to know22 concerns the removal of the possibility of the child making his/her own decision whether or not to undergo medical treatment at a future time. In the context of genetic testing, it has been said, for example, that
[t]esting during childhood removes the individual’s future autonomy and confidentiality, and may cause damage to their self-esteem and future interpersonal relationships.23
Any supposed “right” of children to make up their own minds about having such a test when they are older must, however, be balanced against claims that the failure to test deprives children of the “right” to grow up in an atmosphere of openness and understanding of their situation and a “right” or interest not to form unrealistic hopes and plans about the future. These might include the right to make informed plans and decisions about, for example, rational education prospects (how long a period of preparation for a career would be rational?), rational career prospects, rational marriage plans, and rational timing of children.
This is not to say that it is obviously in a child’s interests to be tested. Indeed, there may be situations when testing is manifestly contrary to a child’s best interests. The point to be made, however, is that such interests cannot be determined solely by reference to a child’s autonomy interests.24 Such cases raise real questions about where the balance of a child’s best interests lie and consideration must be given to factors other than autonomy that may determine whether a child’s medical/genetic status is to be known.
One clear conclusion here is that there is no sense in which a decision not to test children, even for late-onset conditions, protects their autonomy, whereas a decision to test violates it. Again autonomy walks both sides of this street and any such decisions must be based on a calculation of the best interests of the child and on whether or not there are sufficiently powerful and clear grounds to override the parent’s presumptive claim to be the guardian of such interests.
If decisions must be taken on behalf of children, the presumption must surely be that health screening is primarily a matter for parents. This and most societies operate rightly with the view that unless and until it can be shown that the presumption that parents are the best guardians of their children’s interests must be overturned in order to protect children from serious harm, decisions about most things concerning children should remain with parents.25
It is true that to raise a child in the knowledge that he or she will develop a dreaded familial disease may cause additional harm, but there is no reason to assume that this must be so. Unless there is strong reason to suppose that serious harm will result, which I doubt, the principle of nonmaleficence cannot be invoked. The psychological impacts, for example, of being informed of a familial disease are contested.26 Furthermore, it should be noted that even where the principle of nonmaleficence is appropriately invoked, that is, where disclosing information about the child’s health status is likely to do more harm than good, it is always a further and separate ethical question as to whether disclosing information the results of which may not be in the child’s overall interests is wrongful. Many people believe that bringing children up in a religion, for example, is strongly against the child’s interests, but it does not follow that this practice must be prevented. It would be difficult to defend a diet of so-called “junk food” or of pulp fiction or of the tabloid press, or of game shows, “soaps,” and reality television. We tend to forget how much of what happens to children as a result of parental choice or at least of parental “consent” or acquiescence is scarcely describable as either in the child’s best interests or indeed even in the child’s interests at all. We should be cautious about moving from plausible judgments about the interests of the incompetent to drastic conclusions as to what may or may not be permitted. This caution has been singularly lacking in the literature invoking child welfare and we should all be reluctant to consent to being controlled by those who believe the enforcement of morality is a first duty rather than, perhaps, a last resort.