In his Life of Galileo, Bertolt Brecht gives a memorable insight into the justification of science to Galileo. Talking to Andrea Sarti, his former student and colleague, who is about to smuggle the Discorsi, Galileo’s heretical treatise on mechanics and local motion out of Italy, Galileo says2:
The battle for a measurable heaven has been won thanks to doubt; but thanks to credulity the Rome housewife’s battle for milk will be lost time and time again. Science, Sarti, is involved in both these battles. A human race which shambles around in a pearly haze of superstition and old saws, too ignorant to develop its own powers, will never be able to develop those powers of nature which you people are revealing to it. To what end are you working? Presumably for the principle that science’s sole aim must be to lighten the burden of human existence. If the scientists, brought to heel by self-interested rulers, limit themselves to piling up knowledge for knowledge’s sake, then science can be crippled and your new machines will lead to nothing but new impositions. You may in due course discover all that there is to discover, and your progress will nonetheless be nothing but a progress away from mankind. The gap between you and it may one day become so wide that your cry of triumph at some new achievement will be echoed by a universal cry of horror.…
Had I stood firm the scientists could have developed something like the doctors’ Hippocratic oath, a vow to use their knowledge exclusively for mankind’s benefit. As things are, the best that can be hoped for is a race of inventive dwarfs, who can be hired for any purpose.
The possibility of human enhancement highlights not only an important justification for pursuing the science that will yield human enhancements, but one of the strongest justifications for the entire enterprise of science, one moreover that many scientists who take the “knowledge for its own sake” approach to science have firmly rejected. At the end of this investigation into the ethics of human enhancement it is not inappropriate to consider the ethical imperatives behind the science that makes, or perhaps we should more cautiously say “may continue to make,” human enhancement a reality.
We began with the idea that human enhancement is good by definition, just as a benefit must obviously be beneficial. This is trivially true, but enhancements are also good of course because those things we call enhancements do good: they make us better, not simply by curing or ameliorating our ills, but because they make us better people, less the slaves to illness and premature death, less fearful because we have less to fear, less dependent, not least upon medical science and on doctors. For these and other reasons we have suggested that enhancements are a moral duty.
We have seen that many of those who oppose enhancement wish us to accept the world as it is, to accept our limitations, even to take pride in them and rejoice at them. In Michael Sandel’s words “appreciating the gifted quality of life constrains the Promethean project and conduces to a certain humility.”3 Sandel and other objectors to enhancement want us to be humble … ever so humble. They also want us to foster “an openness to the unbidden” and an acceptance of the limitations that come, always unbidden, into our lives. Again and of course, when something is unavoidable or inevitable there can be wisdom in acceptance, in making the best of a bad lot. But science and technology are all the time changing our conception of what is inevitable and what is possible and they can do this only because science and technology are ongoing activities. They have a place in our world and in our societies, not simply because people are naturally intellectually curious, but because science and technology do palpable good. This good will not occur without the practice of science but this cannot rely on the voluntary activities of the curious alone. It requires support, endorsement, and protection. In this chapter I consider the moral case for science research, for the intellectual activity and practical research which generates not only most of the enhancements we have been considering but indeed most of the nonenhancing therapies and practices which continue to make the world a safer and a better place.
At the heart of the difference between my own approach to enhancement and that of those who oppose it is a view of both the nature of philosophy and the nature of science.
In terms of philosophy, I believe, as Karl Marx remarked (but it might as easily have been Plato), “The philosophers have only interpreted the world, in various ways; the point, however, is to change it,”4 and I share with Bertolt Brecht the idea that the purpose of science is necessarily also an interested not simply a disinterested purpose—it is a moral purpose.5 Of course we can be simply curious if we like, but the justification for science and for philosophy is not simply in terms of the disinterested pursuit of knowledge but in terms of the benefits that such a pursuit can bring. There is a universal responsibility to pursue the good, for ourselves and others. With it comes a responsibility to be analytic and autonomous, to decide what is good and to seek it out.
It is perhaps obvious (although this book has provided arguments that show the truth of these obvious ideas)6 that, granted enhancements do good, are beneficial, serve our interests, and protect us from harm, we always have moral reasons to pursue them. But what of the so-called “blue skies” research, that is, research which is curiosity driven and which does not appear to have an immediate practical or beneficial outcome that can lead to techniques of enhancement becoming a reality? Is there a moral obligation to undertake, support, and even to participate in serious scientific research? If there is, does that obligation require not only that research be undertaken but also that “we” as individuals and “we” as societies be willing to support and even participate in research where necessary? Is there, in short, a strong moral argument not only to avail ourselves of such enhancements as are to hand but also to carry out, fund, and even participate in the research required to generate new enhancing technologies and practices?
Thus, by far the overwhelming answer given to this question has been “no,” and research has almost universally been treated with suspicion and even hostility by the vast majority of all those concerned with the ethics and regulation of research. The so-called “precautionary approach”7 sums up this attitude, requiring dangers to be considered more likely and more serious than benefits and assuming that no sane person would or should participate in research unless they had a pressing personal reason for so doing or unless they were motivated by a totally impersonal altruism. International agreements and protocols (The Declaration of Helsinki8 and the CIOMS Guidelines9, for example) have been directed principally to protect individuals from the dangers of participation in research and to ensure that, where they participate, their full informed consent is assured. The overwhelming presumption has been and remains that participation in research is a superogatory and perhaps even a reckless act, not an obligation.
Suspicion of doctors and of medical research is well-founded. In the modern era it was revived by the aftermath of the Nazi atrocities and by the original Helsinki declaration prompted, although rather belatedly, by the Nazi doctors’ trial at Nuremberg.10 More recently, it has been fueled by further examples of extreme medical arrogance and paternalism, for example, the Tuskegee Study of Untreated Syphilis,11 in which 412 poor African-American men were deliberately left untreated from 1932 to 1972 so that the natural history of syphilis could be determined.12 Even when penicillin became known to be effective against syphilis, they were left untreated. More recently, in the United Kingdom, a major scandal caught the public imagination and reflected serious medical malpractice; it involved the unauthorized and deceitful post mortem removal and retention of organs and tissue from children.13
These and many other cases seem to provide ample justification for the presumption of suspicion of and even hostility to medical research, and scientific research more generally. However, vigilance against wrongdoing is one thing, the inability to identify wrongdoing with the result that the good is frustrated and harm caused is quite another.
When we ask whether or not there is a moral obligation to support and even to participate in serious scientific research, we need first to be clear that we are talking of research directed toward preventing serious harm or providing significant benefits to humankind. In all cases the degree of harm or benefit must justify the degree of burden on research subjects, individuals, or society. This balance will be explored below. Of course, the research must also be serious in the sense that the project is well-designed and with reasonable prospect of leading to important knowledge that will benefit persons in the future.14
The justification of science must be seen in terms of the good that it does. The problem of course is that we do not always know and cannot sometimes even anticipate the applications of scientific enquiry. For this reason, as we have noted, it is necessary to defend and indeed actively to promote even so-called “blue skies” research which is serious, well-designed, and which investigates fundamental problems. Of course the risks we may be prepared to run and the costs which it would be rational to bear when we have no idea about possible outcomes will be proportionally more modest. In an important report submitted to the National Bioethics Advisory Commission (NBAC) of the United States, Dr. David Korn15 meticulously documented the ways in which archive samples, retained organs, and tissue, often kept simply in case it should prove useful for research, have contributed massively and often unexpectedly to medical advances. This report contains very many examples of research where the particular beneficial use could not have been, and was not in fact, anticipated in advance.
Two separate but complementary lines of argument underpin a powerful obligation to pursue, support, and participate in scientific research.
The first is one of the most powerful obligations that we have: the obligation not to harm others. Where our actions will or may probably prevent serious harm, then if we can (reasonably, given the balance of risk and burden to ourselves and benefit to others), we clearly should act because to fail to do so is to accept responsibility for the harm that then occurs.16 This is the strong side of a somewhat weaker, but still powerful, duty of beneficence: our basic moral obligation to help other people in need. This is sometimes called “the rule of rescue.”17 We tend to think of rescues as dramatic events with heroes snatching victims from the jaws of death. However, rescue occurs whenever people faced with threats to their lives or health receive assistance which mitigates these needs or their effects. Most, if not all, diseases create needs, in those who are affected and in their relatives, friends, and carers, and indeed in society. Because medical research is a necessary component of relieving that need in many circumstances, furthering medical research becomes a moral obligation. This obligation involves supporting research in many ways, for instance, economically, at the personal, corporate and societal levels, and indeed politically it also involves physical participation in research projects.
We have seen that there is a continuum, an overlap or potent analogy between treating or curing dysfunction and enhancing function. This continuum has two dimensions. In one sense, the withholding of a benefit that could be conferred harms the potential recipient. It is always in our interests to receive a benefit, against our interests not to receive a benefit. If the potential recipient knows about the possibility of receiving the benefit, she will probably wish to receive it, so that not only her interests but also her desires, wants, and choices are engaged by the possibility of receiving benefits. Often also, as we have noted, the very same actions or procedures that constitute therapies for some will offer enhancement to others. These two dimensions of the continuum between ameliorating dysfunction and enhancing function mean that a decision to withhold benefit is always damaging: always something a decent person has a moral reason not to do. Whether those moral reasons are decisive will, of course, depend on many other things, including an assessment of the risks and costs of conferring the benefit.
Second, the obligation also flows from an appeal to basic fairness. This is sometimes expressed as an appeal to the unfairness of being a “free rider.” We all benefit from the existence of the social practice of medical and scientific research. Many of us would not be here if infant mortality had not been brought under control, or antibiotics had not been discovered and made usable. Most of us will continue to benefit from these and other medical advances (and indeed other advances such as clean drinking water and sanitation). Since we accept these benefits, we have an obligation in justice to contribute to the social practice which produces them. We may argue that since we could not opt out of advances that were made prior to our becoming capable of autonomous decision making we are not obliged to contribute. But it may still be unfair to accept the benefits of science and such acceptance implies also that we will forgo the fruits of any future advances.18 For example, we bear duties of reciprocity to our parents for their care of us although we did not choose our parents nor the care they gave us in early life. Few, however, are willing to reject benefits to which we have not contributed, and even fewer really willing to forgo benefits that have been created through the sacrifices of others when their own hour of need arises! Reciprocity, however, is not confined to circumstances in which a direct return can be made to those who have previously contributed. Reciprocity is not “repayment,” it is more akin to mutuality, solidarity, or fellowship. The idea is one of a community which accepts mutual responsibility, not least because such mutuality has been accepted by others and because all have benefited from the actions or forbearance of others.
It should be clear how what I am claiming relates to the principle which is sometimes called the “principle of fairness,” developed by Herbert Hart and later by John Rawls.19 That principle may be interpreted as saying “those who have submitted to … restrictions have a right to similar acquiescence on the part of those who have benefited from their submission.”20 Here I am not suggesting an enforceable obligation to participate based on fairness, although such an enforceable obligation would, as we shall see, certainly in some circumstances be justified by the argument of this chapter. Nor am I proposing any right, possessed by those who participate, to similar acquiescence on the part of those who benefit. However, being a free rider is unfair and people always have a moral reason not to act unfairly. This moral reason is probably enough to justify an enforceable obligation but we do not have to use compulsion as a strategy of first resort. It is surely powerful enough, however, to rebut some of the presumptions against an obligation to support and participate in research.
There may be specific facts about me and my circumstances that absolve me from the obligation to be a research subject in a given situation. This could be the case if I have just participated in other burdensome experiments and there are other potential research subjects who have not done so, or if participation would create excessive burdens for me that it would not create for other potential participants. This does not show that the general obligation we have identified does not exist, just that it, like most other or perhaps all moral obligations, can be overridden by other moral considerations in specific circumstances.21
We all benefit from living in a society, and, indeed, in a world in which serious scientific research is carried out and which utilizes the benefits of past research. It is both of benefit to patients and research subjects and in their interests to be in a society which pursues and actively accepts the benefits of research and where research and its fruits are given a high priority. We all also benefit from the knowledge that research is ongoing into diseases or conditions from which we do not currently suffer but to which we may succumb. It makes us feel more secure and gives us hope for the future, for ourselves and our descendants, and others for whom we care. Finally, and most importantly given our present concerns, we have all benefited from the many enhancing practices, methodologies, technologies, and evolutionary strategies that have enabled us to adapt to a changing environment and develop powers and capacities scarcely imaginable to our ancestors, human or ape.
If this is right, then you and I have a strong general interest that there be research (and that it be well-founded), not excluding, but not exclusively, research on ourselves and on our condition or indeed on conditions which are likely to affect me and mine, you and yours. All such research is also of clear benefit to you and me. A narrow interpretation of the requirement that research be of benefit to the subject of the research is therefore perverse.22
Moreover, almost everyone now living, certainly everyone born in high-income, industrialized societies, has benefited from the fruits of past research. We all benefit, for example, either from having been vaccinated against diseases like polio, smallpox, and others or from the so-called “herd” immunity because others have been vaccinated; or we benefit (as in the case of smallpox) from the fact that the disease has actually been eradicated. To take another obvious example, almost at random, we all benefit from the knowledge of connections between diet, exercise, and heart disease. This knowledge enables us to adopt preventive strategies and indeed enhancement strategies and gives us ways of calculating our level of personal risk.
In view of these considerations there is a clear moral obligation to participate in medical research or any research that has reasonable prospect of enhancing our lives or our material condition in certain specific circumstances. This moral obligation is, as we have seen, straightforwardly derivable from either of two of the most basic moral obligations we have as persons. This obligation is importantly not confined to purely therapeutic research but also involves all beneficial research including research into human enhancement. Of course no one should be obliged to take disproportional risks, and participation in research where there is serious (that is, a high) probability of risk to life or health should not be mandatory.23
This entails that there are circumstances where an adult, competent person ought to participate in research, even if participating is not in his or her best interests narrowly defined. If I am asked to give a blood sample for a worthwhile research project, or if I am asked if tissue removed during an operation may be retained for research or therapeutic use, I may have to think in the following way: in the case of giving the blood sample I may say to myself “I hate needles and the sight of my own blood!” Equally, with retained tissue or organs I may feel that since I understand little of the future uses for my tissue it would be safer to say “no.”
In each case we will suppose that the disease being investigated is not one that I or anyone I know is likely ever to get, so giving this blood sample or allowing the use of excised tissue is not in my best interests narrowly conceived. In this situation doing what is best, all things considered, therefore seems to entail not doing what is best for myself, not pursuing my own best interests. But this is not really so. Some of my main interests have not been identified and taken into account in this hypothetical train of thought. One of these is my interest in taking myself seriously as a reflective moral agent, and my interest in being taken seriously by others. Identifying my moral obligations, and acting on them, is not contrary to my interests, but is an integral part of what makes me a moral agent.24 But more importantly, as we have seen, I do have a powerful interest in living in a society and indeed in a world in which scientific research is vigorously pursued and is given a high priority.
Research into enhancing procedures is almost always, as we have seen, also therapeutic because almost all conceivable enhancement procedures will also have nonenhancing or not necessarily enhancing uses, such as where procedures that will enhance normal brains might repair damaged brains and vice versa. But, in cases where research was aimed purely at enhancement, the moral imperative would be equally clear, since we all may expect to benefit personally from enhancements, though not all of us may ever be victims of any particular disease or injury.
A number of the most influential international protocols on science research seem to contradict the claims made so far and we must now examine these more closely.25 One of the most widely cited principles is contained in a crucial paragraph of The World Medical Association Declaration of Helsinki:26
Paragraph 5. In medical research on human subjects, considerations related to the well-being of the human subject should take precedence over the interests of science and society.
This paragraph is widely cited in support of restrictions on scientific research and is interpreted as requiring that all human subject research is in the narrowly conceived interests of the research subjects themselves; this article of faith has become almost unchallengeable.
We need first to examine more closely the idea of what is or is not in someone’s interests.27 We should note at the outset that what is or is not in a particular individual’s interests is an objective matter. While subjects have a special role to play in determining this, we know that human beings are apt to act against their own interests. Indeed, the idea of respect for persons which underpins this guideline has two clear and sometimes incompatible elements, namely, concern for welfare and respect for autonomy. Because people often have self-harming preferences (smoking, drug abuse, selfless altruism, etc.) they are sometimes bad judges of their own interests.
The interests of the subject cannot be paramount nor can they automatically take precedence over other interests of comparable moral significance. The claim that the interests of the subject cannot be paramount involves a straightforward mistake: being or becoming a research subject is not the sort of thing that could conceivably augment either someone’s moral claims or, for that matter, her rights. All people are morally important and, with respect to one another, each has a claim to equal consideration. No one has a claim to overriding consideration. To say that the interests of the subject must take precedence over those of others, if it means anything, must be understood as a way of reasserting that a researcher’s narrowly conceived professional interests must not have primacy over the human rights of research subjects.28 However, as a general remark about the obligations of the research community, the health care system, or of society or indeed of the world community, it is not sustainable.
This is not of course to say that human rights are vulnerable to the interests of society whenever these can be demonstrated to be greater. On the contrary, it is to say that the rights and interests of research subjects are just the rights and interests of persons and must be balanced against comparable rights and interests of other persons. In the case of medical research, the contrast is not between vulnerable individuals on the one hand and an abstract entity like “society” on the other, but rather between two different groups of vulnerable individuals. The rights and interests of research subjects are surely not served by privileging them at the expense of the rights and interests of those who will benefit from research. Both these groups are potentially vulnerable, neither is obviously prima facie more vulnerable or deserving of special protection.
Indeed, often there is no mutual exclusivity between the two groups, research subjects often also benefiting from research and often being also the most immediate beneficiaries.
It is important to emphasize that the point here is not that there is some general incoherence in the idea of sometimes privileging the rights and interests of particularly vulnerable groups in order to guarantee to them the equal protection that they need and to which they are entitled. Rather, I am suggesting two things. The first is that all people have equal rights and entitlement to equal consideration of interests. The second is that any derogation from a principle as fundamental as that of equality must be justified by especially powerful considerations.
Finally, although what is or is not in someone’s interests is an objective matter about which the subject herself (or himself) may be mistaken, it is usually the best policy to let people define and determine “their own interests.” While it is of course possible that people will misunderstand their own interests and even act against them, it is surely more likely that people will understand their own interests best. It is also more respectful of research subjects for us to assume that this is the case unless there are powerful reasons for not doing so.29
It is widely recognized that there is clearly sometimes an obligation to make sacrifices for the community or an entitlement of the community to go so far as to deny autonomy and even violate bodily integrity in the public interest and this obligation is recognized in a number of ways.30
There are a perhaps surprisingly large number of cases where we accept substantial degrees of compulsion or coercion in the interests of those coerced and in the public interest. For example: in limiting access to dangerous or addictive drugs or substances; control of road traffic including compulsory wearing of car seat belts; vaccination as a requirement, for example, for school attendance or travel; screening or diagnostic tests for pregnant mothers or for newborns; genetic profiling for those suspected of crimes; quarantine for some serious communicable diseases; compulsory military service; detention under mental health acts; safety guidelines for certain professional activities of HIV positive people; and compulsory attendance for jury service at criminal trials. Universal education for children, requiring as it does compulsory attendance in school, is another obvious example. All these involve some denial of autonomy, some imposition of public standards even where compliance is not based on the competent consent of individuals. However, these are clearly exceptional cases in which overriding moral considerations take precedence over autonomy. Might medical research be another such case?
The examples cited above demonstrate a wide range of what we might term “mandatory contribution to public goods.” I will take one of these as a model for how we might think about participation in science research.32
All British citizens between the ages of eighteen and seventy33 are liable for jury service. They may be called and, unless excused by the court, must serve. This may involve a minimum of ten days but sometimes months of daily confinement in a jury box or room, whether they consent or not. However, although all are liable for service, only some are actually called. If someone is called and fails to appear, they may be fined. Most people will never be called but some must be if the system of justice is not to break down. Participation in, or facilitation of, this public good is mandatory. There are many senses in which participation in vaccine or drug trials involve features relevantly analogous to jury service. Both involve inconvenience and the giving up of certain amounts of time. Both are important public goods. It is this latter feature that is particularly important. Although jury service (or compulsory attendance as a witness) is an integral part of “due process,” helping to safeguard the liberty and rights of citizens, the same is also true of science research. Disease and infirmity have profound effects on liberty and, while putting life-threatening criminals out of circulation or protecting the innocent from wrongful imprisonment is a minor (numerically speaking) product of due process, lifesaving is a major product of science research. If compulsion is justifiable in the case of due process, the same or indeed more powerful arguments would surely justify it in the case of science research.
Of course “compulsion” covers a wide range of possible measures. Compulsion may simply mean that something is legally required, without there being any penalties for noncompliance. Such legal requirement may be supported by various penalties or incentives, from public disapproval and criticism, fines, or loss of tax breaks on the one hand, to imprisonment or forcible attendance or participation further along the spectrum on the other. To say that it would be legitimate to make science research compulsory is not to say that any particular methods of compulsion are necessarily justified or justifiable. While it seems clear that mandatory participation in important public goods is not only justifiable but also widely accepted as justifiable in most societies, as the examples above demonstrate, my own view is that voluntary means are usually best and that any form of compulsion should normally be a last resort to be used only when consensual means fail or where the need for a particular research activity is urgent and of overwhelming importance. If the arguments of this chapter are persuasive, compulsion should not be necessary and we may expect a climate more receptive to both the needs and the benefits of science. However, to point out that compulsion may be justifiable in some circumstances in the case of science research establishes that a fortiori less stringent means are justifiable in those circumstances.
I hope it is clear that I am not here advocating mandatory participation in research, merely arguing that it is in principle justifiable, and may in certain circumstances become justified in fact. There is a difference between ethics and public policy. To say that something is ethical and therefore justifiable is not the same as saying it is justified in any particular set of circumstances, nor is it to recommend it nor yet to propose it as a policy for immediate or even for eventual implementation. For example, if I say that prostitution is justifiable and should be permitted, I am not necessarily encouraging its use either for sex workers or “punters,” nor yet as a career for my niece or nephew. Consensual participation is usually preferable and persuasion by a combination of evidence and rational argument is almost always the most appropriate way of achieving social and moral goals. This chapter is an attempt to do precisely this. I believe, for example, that conscription into the armed forces is justifiable, but I am not recommending, still less advocating, its reintroduction into the United Kingdom at this time. The distinction between ethical argument and policy proposal is crucial but is almost always ignored, particularly by the press and news media that report on these matters. Here I am intending to do ethics; this chapter is not a policy proposal, although it does contain one policy proposal, which we will come to in due course.
If I am right in thinking that research is a public good, that may in extremis justify compulsory participation, then a number of things may be said to follow.
• It should not simply be assumed that people would not wish to act in the public interest, at least where the costs and risks involved are minimal. In the absence of specific evidence to the contrary, if any assumptions are made, they should be that people are public spirited and would wish to participate.34
• It may be reasonable to presume that people would not consent (unless misinformed or coerced) to do things contrary to their own interest and to that of the public. The reverse is true when (as with vaccine trials) participation is in both personal and public interest.
• If it is right to claim that there is a general obligation to act in the public interest, then there is less reason to challenge consent and little reason to regard participation as actually or potentially exploitative. We don’t usually say “are you quite sure you want to?” when people fulfill their moral and civic obligations. We don’t usually insist on informed consent in such cases; we are usually content that they merely consent or simply acquiesce. When, for example, I am called for jury service, no one says, “only attend if you fully understand the role of trial by jury, due process, etc., in our constitution and the civil liberties that fair trials guarantee.”35
We must weigh carefully and compassionately what it is reasonable to put to potential participants in a trial for their free and unfettered consideration. However, provided potential research subjects are given adequate information,36 and are free to participate or not as they choose, then the only remaining question is whether it is reasonable to permit people freely to choose to participate given the risks and the sorts of likely gains. Is it reasonable to ask people to run whatever degree of risk is involved, to put up with the inconvenience and intrusion of the study, and so on, in all the circumstances of the case? These circumstances will include both the benefits to them personally of participating in the study and the benefits that will flow from the study to other persons, persons who are of course equally entitled to our concern, respect, and protection (if any are). Putting the question in this way makes it clear that the standards of care and levels of protection to be accorded to research subjects who have full information must be, to a certain extent, study relative.
It is crucial that the powerful moral reasons for conducting science research are not drowned by the powerful reasons we have for protecting research subjects. There is a balance to be struck here, but it is not a balance that must always and inevitably be loaded in favor of the protection of research subjects. They are entitled to our concern, respect, and protection to be sure, but they are no more entitled to it than are, say, the people whom, for example, HIV/AIDS or other major diseases are threatening and killing on a daily basis.37
It is surely unethical to stand by and watch 3 million people die this or any year of AIDS38 and avoid taking steps to prevent this level of loss—steps which will not put lives at risk and which are taken only with the fully informed consent of those who participate. Fully informed consent is the best guarantor of the interests of research subjects. While consent is not foolproof, residual dangers must be balanced against the dangers of not conducting the trial or the research, which include the massive loss of life that possibly preventable diseases cause.39
An interesting limiting case is that in which the risks to research subjects are significant and the burdens onerous, but where the benefits to other people are equally significant and large. In such a case the research is both urgent and moral but conscription would almost certainly not be appropriate because of the unfairness of conscripting any particular individual to bear such burdens in the public interest. That is not of course to say that individuals should not be willing to bear such burdens, nor that it is not their moral duty so to do. In fact, the history of science research is full of examples of people willing to bear significant risks in such circumstances; very often these have been the researchers themselves.40
I have so far said nothing about the public–private divide in research funding and about the fact that much of the research we have referred to has been carried out in the private sector for profit. This has inevitably led to a concentration both on what the comedian Tom Lehrer41 memorably called “diseases of the rich” and on conditions where, for whatever reason, a maximum return on investment is to be expected. Here we simply note that the duty to participate in research is not a duty to enable industry to profit from moral commitment or basic decency, and that fairness and benefit sharing as well as the widest and fairest possible availability of the products of research is, as we have seen, an essential part of the moral force of the arguments for the obligation to pursue research. Benefit sharing must therefore be part of any mechanisms for implementing an obligation to participate in research.
Anew principle of research ethics suggests itself as an appropriate addition to the Declaration of Helsinki:
Biomedical research involving human subjects cannot legitimately be neglected, and is therefore both permissible and mandatory, where the importance of the objective is great and the risks to and the possibility of exploitation of fully informed and consenting subjects is small.42
Thus, while fully informed consent and the continuing provision to research subjects of relevant information does not eliminate all possibility of exploitation,43 it does reduce it to the point at which it could no longer be ethical to neglect the claims and the interests of those who may benefit from the research. It should be noted that it is fully informed consent, and the concern and respect for the individual that it signals, which severs all connection with the Nazi experiments and the concerns of Nuremberg, and which rebuts spurious comparisons with the Tuskegee study.44 It is this recognition of the obligation to show equal concern and respect for all persons, which is the defining characteristic of justice.45 The recognition that the obligation to do justice applies not only to research subjects but also to those who will benefit from the research must constitute an advance in thinking about international standards of research ethics.
The Declaration of Helsinki states:
Medical research is only justified if there is a reasonable likelihood that the populations in which the research is carried out stand to benefit from the results of the research.46
It is sometimes claimed that where consent is problematic or, as perhaps with genetic research on archival material, where the sources of the material are either dead or cannot be traced, that research may be legitimate if it is for the benefit of the health needs of the subjects or of people with similar or related disorders.47 The suggestion that research which is not directly beneficial to the patient be confined to research that will benefit the category of patients to which the subject belongs seems not only untenable but also offensive. What arguments sustain the idea that the most appropriate reference group is that of fellow sufferers from a particular disease, Alzheimer’s, for example? Surely any moral obligation I have to accept risk or harm for the benefit of others is not plausibly confined to those others who are narrowly like me. This is surely close to claiming that research should be confined to others who are “black like me” or “English like me” or “God-fearing like me”? The most appropriate category is surely “a person like me.”48
But what about children?49 Do they have an obligation to participate in research and, if they have, is a parent justified in taking it into account in making decisions for the child?
If children are moral agents, and most of them (except very young infants) are, then they have both obligations and rights, and it will be difficult to find any obligations that are more basic than the obligation to help others in need. There is therefore little doubt that children share the obligation argued for in this chapter: to participate in medical research. A parent or guardian is accordingly obliged to take this obligation into account when deciding on behalf of her child and is justified in assuming that the person they are making decisions for is, or would wish to be, a moral person who wants to or is in any event obliged to discharge his or her moral duties. If anything is presumed about what children would have wished to do in such circumstances, the presumption should surely be that they would have wished to behave decently and would not have wished to be free riders. If we simply consult their best interests (absent the possibility of a valid consent), then again, as this chapter has shown, participation in research is, other things being equal, in their best interests. However, because of the primacy of autonomy in the structure of this argument we should be cautious about enrolling those who cannot consent in research and should never force resisting incompetent individuals to participate. It also follows from principles of justice and fairness that those who are not competent to consent should not be exploited as prime candidates for research. We should always therefore prefer autonomous candidates and only use those who cannot consent when such individuals are essential for the particular research contemplated and where competent individuals cannot, because of the nature of the research,50 be used. In those extreme cases in which we might contemplate mandatory participation, the same will hold. The incompetent should only be used where competent individuals cannot be research subjects because of the nature of the research itself.
Before concluding, a word needs to be said about inducements to research, not least because inducements are an obvious alternative to mandatory participation in research. Most research ethics protocols and guidelines are antipathetic to inducements. For example, the CIOMS guidelines state that if inducements to subjects are offered, “[t]he payments should not be so large, however, or the medical services so extensive as to induce prospective subjects to consent to participate in the research against their better judgment (undue inducement).”51
However, the gloss that the CIOMS document offers on this guideline is perhaps confused. It states that “[s]omeone without access to medical care may or may not be unduly influenced to participate in research simply to receive such care.”52 The nub of the problem is the question: what is it that makes inducement undue? If inducement is undue when it undermines “better judgment,” then it cannot simply be the level of the inducement nor the fact that it is the inducement that makes the difference between participation and nonparticipation that undermines better judgment. If this were so, all jobs with attractive remuneration packages would constitute “undue” interference with the liberties of subjects and anyone who used their better judgment to decide whether a total remuneration package plus job was attractive would have been unduly influenced.53
Surely, it’s only if things are very different that influence becomes undue. If, for example, it were true that no sane person would participate in the study and only incentives would induce them to disregard “better judgment” or “rationality,” or if the study were somehow immoral, or participation was grossly undignified and so on, would there be a legitimate presumption of undue influence.
Grant a number of assumptions: research is well-founded scientifically and has important objectives which will advance knowledge; the subjects are at acceptable levels of risk given the benefits;54 the inconvenience, and so on, of participation is not onerous. Then surely it is not only in everyone’s best interests that some people participate but also in the interests of those who do. Better judgment surely will not indicate that any particular person should not participate. Of course, someone consulting personal interest and convenience might not participate: “it’s too much trouble, not worth the effort, rather inconvenient,” and so on. However, removing the force of these sorts of objections with incentives is not undermining better judgment any more than is making employment attractive.55
Of course, inducements may be undue in a different sense, for example, if a research subject were a drug addict and she were to be offered the drug of her choice to participate, or subjects were blackmailed into participating in research; in such cases we might regard the inducements as undue. However, it is important to note that here the influence or inducement is undue not because it is improper to offer incentives to participate, nor because participation is against the best interests of the subject, nor because the inducements are coercive in the sense that they are irresistible, but rather because the type of incentive offered is illegitimate or against the public interest or immoral in itself.
If I offer you a million dollars to do something involving minimal risk and inconvenience, something that is good in itself, is in your interests, and will benefit mankind, my offer may be irresistible but it won’t be coercive. However, if I threaten you with torture unless you do the same thing, my act will be coercive even if you were going to do it whether or not I threatened you. I should be punished for my threat or blackmail or criminal offer of illegal substances, but surely you should nonetheless do the deed and your freedom to do it should not be curtailed because of my wrongdoing in attempting to force your hand in a particular way. The wrong is not that I attempted to force your hand, but resides rather in the wrongness of the methods that I chose. This is the distinction between undue inducement and inducements which are undue. “Undue inducement” is the improper offering of inducements, improper because no inducements should be offered. It is this that is referred to in the various international protocols we have been examining and which is almost always wrongly understood and wrongly applied. “Inducements which are undue,” refer to the nature of the inducement, not to the fact of it being offered at all. This is an important but much neglected distinction. Here it is the nature of the inducement that is undue rather than the fact of inducements of some sorts (even irresistible sorts) being offered.
We can see that offering incentives, perhaps in the form of direct payment or tax concessions to people to participate in research, or, for example, to make archive samples available for research, would not be unethical.
One of the worries about payment for research participation is that it will “crowd out willingness to participate” by suggesting that participation is bad for you and requires “compensation.” I have frequently suggested that neither compensation nor reward undermine altruism; rather, they complement it. Nursing and medicine are caring professions despite the fact that the “professionals” are rewarded for their altruistic choice of vocation. Indeed, there could scarcely be an altruistic vocation that was not rewarded financially as well as morally. If a possible further response were needed (which it is not), it is that, as Julian Le Grand’s discussion of Richard Titmuss reveals, strong enough egoistic incentives (based, for example, on the prospect of particularly high remuneration for contribution), while admittedly diminishing altruistic tendencies, usually generate very strong prudential reasons to contribute. The prudential motivation that they generate can more than compensate for the motivational loss in altruistic terms.56
There is then a moral obligation to participate in medical and science research more generally in certain contexts.57 This will obviously include minimally invasive and minimally risky procedures such as participation in Biobanks provided safeguards against wrongful use are in place. The argument concerning the obligation to participate in research should be compelling for anyone who believes that there is a moral obligation to help others, and/or a moral obligation to be just and do one’s share. Enhancements being both necessarily good and often very significant goods indeed share importantly in this general obligation. Little can be said to those whose morality is so impoverished that they do not accept either of these two obligations.
Furthermore, we are justified in assuming that a person would want to discharge his or her moral obligations in cases in which we have no knowledge about their actual preferences. This is a way of recognizing them as moral agents. To do otherwise would be to impute moral turpitude as a default. Parents making decisions for their children, and other surrogate decision makers, are therefore fully justified in assuming that their child, or the individual for whom they are empowered to decide, will wish to do that which is right, and not do that which is wrong. Research then is a necessary part of enhancement; it requires commensurate support and endorsement.
It is appropriate that we end looking to the future, reminding ourselves of the giants on whose shoulders we stand and defending the blue skies research that has, since Plato’s thought experiments and Aristotle’s observations,58 been not only the inspiration of science and of intellectual enterprise, but the birth, basis, and backbone of the life of the mind.