Making People Better and Making Better People: Bioethics and the Regulation of Stem Cell Research (Part II)

COSMOPOLITAN AND LOCAL: COMMON VALUES AND VALUES IN COMMON

One of the features of the UNESCO Declaration is that it speaks to the importance of cultural diversity. The communitarian wing of the dignitarian alliance already reflects this approach. We can expect local cultural preference to express itself in relation to biotechnology but it is particularly evident in relation to life-style restrictions. Recall, for instance, the local police bans imposed on “dwarf-throwing” in clubs in France and on the Laserdrome “killing game” in Germany. In both cases, the initial question was whether the bans were authorised under police powers to maintain ordre public (in France) or public order (in Germany). This question led, in both cases, to the core issue of whether human dignity, as a fundamental constitutional value, was violated by the banned activities. In the German case, the Omega case, there was also the “European” question: namely, whether the ban, even if consistent with the value of human dignity as expressed by Article 1 of the Basic Law, was compatible with market freedoms, in particular the freedom to provide services under Article 49EC. Stated shortly, the outcome of both cases was that the bans were held to be lawful and in line with respect for human dignity.
There are two ways of reading these decisions, one a straightforward dignitarian interpretation, the other a more complex human rights interpretation. The straightforward reading is that, as held by the dignitarian alliance, each member of the community has a responsibility to act in ways that are consistent with the constitutive value of human dignity. As elaborated by communitarians, the distinctive local take on human dignity (whether relative to the application of biotechnology or the leisure industry) represents its version of civilised society and is the key to its collective (cultural) identity. The alternative reading, which is particularly encouraged by some of the remarks made in the Omega case, is to the effect that participation in certain activities (such as dwarfthrowing or killing games) might awaken or strengthen an attitude of disrespect for the rights of others or for others as rights-holders. If so, such activities represent an indirect threat to a community of (human) rights and the value of human dignity that underpins it. For the State to interfere legitimately with the free and informed life-style choices of the participants takes some considerable justification (a point made forcibly, of course, by Manual Wackenheim, the dwarf who challenged the legality of the bans in France). If the consensual activities of the participants directly impinge on the rights of third-parties, the case for intervention is clear. However, where the threat is indirect and speculative, prohibition is much more difficult to justify - although it should be said that each community of rights, as an ongoing interpretive community, will need to decide both how precautionary it should be and how it should be precautionary in its public policy. The import of these reflections is that the cosmopolitan principles cannot be so determinative that local communities are denied any regulatory choice but nor can the principles be so loose that local communities can do whatever they want in the name of their local cultural preferences. Quite how this conundrum is to be resolved is a major headache for the international bioethical standardbearers - and the particular cases of human reproductive cloning (where there is thought to be no room for local variation) and therapeutic cloning (where some at least would argue for local decision-making) are reminders that this is no idle puzzle.

BIOETHICAL “FLOATERS”

Once we have the bioethical triangle as a frame of reference, it becomes a bit easier to track key ideas such as respect for human dignity. Three floating ideas that need to be anchored are (i) harm, (ii) consent, and (iii) precaution. In each case, we can sketch how these ideas play from different points of the triangle.

(i) The harm principle

The harm principle is very much at home in the context of utilitarian thinking. Famously, this is the setting for the Millian harm principle. Equally famously, though, the principle that we should
define the private sphere by reference to whether our acts occasion any “harm” to “others” is problematic. However, the problem is not one that is simply unique to utilitarianism; the problem is that the concepts of “harm” and “others” are contested at all points of the bioethical triangle.

Utilitarianism following a utilitarian approach, “harm” is largely equated with the stuff of disutility: that is to say,pain and suffering, distress, anxiety, the frustration of plans and non-satisfaction of preferences, and the like. As for “others”, quite simply, they are those beings who are capable of experiencing just this kind of pain and suffering. Applying the harm principle, so understood, to reproductive human cloning, utilitarians will support prohibition so long as the procedure is unsafe and, thus, capable of generating various types of disutility. Should reproductive cloning become a safe and reliable procedure, and should it prove to be less disruptive of familial relations than some fear, utilitarians might find that they are running out of reasons to maintain their opposition. Of course, those who (for non-utilitarian reasons) are distressed by reproductive human cloning will pose some awkward questions for utilitarianminded regulators - in response to which, they might simply disregard such distress as irrational or, following the spirit of Mill, judge that the price of freedom is that the preferences of some will have to be overridden. Applying the same approach to therapeutic cloning, utilitarians will see no objection to terminating the development of a 100-cell human embryo. At that stage of embryonic development, the prevailing wisdom is that there is no possibility of pain and suffering being experienced. The embryo, to be sure, is a potential other; but, at the relevant time, it is not yet in that category and so it is not capable of being harmed.

Human Rights

In its most robust and distinctive form, human rights theory interprets “harm” by reference to the set of human rights, including both negative and positive rights within this set, and viewing such rights under a will or choice theory. It is the presupposition of will theory that gives informed consent its integrated role in human rights thinking, the rights-holder being able to authorise actions that would, consent apart, involve a violation of rights. It follows that, given this approach, it is human “rights-holders” who are the relevant “others”. From such a perspective, human reproductive cloning is to be opposed where it threatens the wellbeing of rights-holders (as it might if cloning procedures issue in the birth of damaged children) or where the autonomy of rights-holders is compromised - hence the intense concerns about cloning for characteristics (particular skills and talents) and the closing off of an open future. As for therapeutic cloning, while human rights theorists might disagree about the stage at which fetal or neonatal life attains rights-holding status (if at all), no will theorist would argue that a 100-cell human embryo is a paradigmatic rights-holder. For, there is, at this stage, a very long way to go before the embryo is capable of actively participating in a community of rights. Accordingly, in the absence of extreme precaution or arguments that are indicative of indirect risk to (unproblematic) rightsholders,
the harm principle offers no reason to prohibit therapeutic cloning. One such indirect argument concerns the corrosion of the conditions that are presupposed by a community of rights-respecting agents. Without collapsing into simple dignitarian conservativism, the implication is that members of communities of rights have responsibilities that go beyond their
individual obligations to one another and their collective support for public goods; they are, so to
speak, stewards of the cultural conditions that support a particular way of life and they owe it, not only to one another but also to future generations, to pass on sustainable conditions. Such an idea definitely merits further consideration; but whether it has any purchase in relation to therapeutic cloning remains to be seen.

The Dignitarians

For dignitarians, “harm” is understood as any act that compromises human dignity; and “others” are understood individually, collectively, and inclusively as members of the community. So understood, the harm principle demands that human reproductive cloning should be prohibited because, even if a clonee is not harmed in any sense that would be recognised by utilitarian or human rights standards, this directly compromises human dignity. As for therapeutic cloning, the embryo is definitely an “other”, it is instrumentalised, and this is a procedure that is harmful - human dignity is violated.

(ii) Consent

It is axiomatic in bioethics that those who are subjects of medical treatment or research should
participate on the basis of free and informed consent. This is spelled out in Article 6 of the UNESCO Declaration. But this is very much a version of consent that is driven by the human
rights perspective. If, by contrast, we take a utilitarian or a dignitarian view, consent will look much less important.

Utilitarianism

Utilitarians count utility and disutility; and, for utilitarians, utility and disutility is all that counts.
As such, there is nothing special about consent or the lack of it. In general, it is easy to see the negatives in relation to consent collection. Obtaining consent might not always be practicable;
where it is, it nevertheless incurs transaction costs; and, on some occasions, it might be downright
distressful. Waiting for consents to be cleared might involve opportunity costs. Moreover, policies might be frustrated if, instead of saying “yes”, those who are asked to consent say “no”. On the other hand, dealing on the basis of consent might ease matters ex ante, it might allay concern and weaken opposition, and it might be a convenient justificatory response ex post. Thus, there is no golden rule requiring that the consent of those upon whom an action or decision impacts should be obtained. For example, requiring researchers or doctors to deal on an informed consent basis with research participants or others is not necessarily an improvement on compulsion, ignorance, or paternalism. The calculation always depends on context, convenience, contingency and circumstance. Having said this, in a culture where preferences strongly favour the currency of consent, even if there is no golden rule requiring consent, utilitarians might well accept the sense of a general rule to this effect.

Human Rights

Against the utilitarians, human rights theorists hold that what counts is respect for individual autonomy, entailing recognition of the right of individuals to make their own choices, to exercise control over their own person, property, and privacy, and to say “yes” or to say “no”. Taking individuals seriously, taking rights seriously, means taking consents and refusals seriously. Viewed from a human rights perspective, consent by A might signal either a change of position or the creation of a new relationship. There is a tendency to focus more on the former than the latter, that is, on consent signalling A’s willingness to modify his or her position in relation to the particular background scheme of rights and duties, permissions and immunities, and the like, that regulates his or her relationship with B (the recipient of the consent). As George Fletcher puts it:
“When individuals consent to undergo medical operations, to engage in sexual intercourse, to open their homes to police searches, or to testify against themselves in court, they convert what otherwise would be an invasion of their person or their rights into a harmless or justified activity”.

The latter function (the creation of a new relationship), however, should not be ignored. Where A signals consent to the creation of a new relationship with B, this might be by virtue of some simple dynamic (such as the giving of a promise or agreement to an exchange of goods) or it might be by virtue of some more complex institutional set (as is the case, for example, if A invokes the law of contract or the law of marriage) or regulated scheme (such as one licensing assisted conception or physician assisted suicide). Where A thus signals consent, then other things being equal A is precluded from asserting that B may not justifiably rely on, or hold A to, the agreed change of position or the terms of the new relationship. Whether A signals a change of position or agreement to the creation of a new relationship, consent functions as a procedural justification (for the benefit of the recipient, B) rather than as a full substantive justification of the kind that would be appropriate if one were arguing for a particular human right itself.

The Dignitarians

For the dignitarians, it is human dignity, not consent, that counts; and it is the interests of all members of the community that count, not merely those of the consenting community. The fact that all parties consent to participation in dwarf-throwing, or to playful killing at the Laserdrome, is irrelevant insofar as these activities compromise human dignity. The duty to respect human dignity is not switched off by the consent of others any more than that it is switched on again by a withdrawal or a refusal of consent. Consent, for the dignitarian, is largely a sideshow.

(iii) Precaution

The precautionary principle has been developed in the context of environmental protection law, the need for sustainable development, and an emphatic support for the polluter pays principle. The principle is formulated in many different ways but the common denominator is that, in the face of scientific uncertainty, and possible damage to the environment, preventive steps should be taken. This could be applied, say, to GM crops but there is no reason why it should not also apply to human genetics or similar science that impacts on humans. It might be said, for example, that it is not ethical to carry out clinical applications of stem cell research until we are confident that they are relatively riskfree, or that germ-line gene therapy should be put off limits.

Cass Sunstein has written a damning critique of the precautionary principle for the simple reason that taking precautionary measures itself involves risk (sacrifice) and that this must be brought into what is otherwise a one-sided narrow screen calculation. My point, however, is that precaution, even if we adopt the wide screen approach rightly argued for by Sunstein, plays differently depending upon where we are coming from in the bioethical triangle.

Utilitarianism

Generally, precaution testifies to a utilitarian concern about safety. However, unless there is a
rule-utilitarian justification for adopting a strict precautionary approach in an identifiable class of
situations, the precautionary calculation cannot be carried out in a one-sided way. For the utilitarian, each option must be reviewed. If it is proposed that we should give up on certain lines of research, it is not enough to plead precaution or risk-aversion or distress avoidance. The utilitarian will want to know what the costs of precaution are (quite literally, how much it is costing to buy a bit more safety, and what benefits are being foregone); and the anticipated net result of the precautionary option will have to be superior to that of any alternative option.

Human Rights

Because precaution relates to harm or damage, as conceived by a particular ethical viewpoint, when we adopt a human rights perspective, it is precaution for the sake of human rights that becomes focal. There are some tricky questions to be resolved here. However, suffice it to say that in a community of rights there might be an argument that we should exercise caution when dealing with human embryos because we might be wrong in assuming that they are not bearers of rights; or, again, it might be suggested that we need to be careful that treating human embryos as a research tool does not change our attitudes so that we suffer a loss of respect for fellow rights-holders. How far we might run with these particular arguments is moot; but there is certainly a precautionary form of argument available within human rights thinking.

The Dignitarians

Dignitarians regard the compromising of human dignity as a self-standing reason for restraint -
precaution does not enter into such an ethic in quite the same way. Crucially, dignitarianism is not interested in consequential calculation, whether of the likely costs and benefits (in the way that a utilitarian impact statement might be drafted) or of the effect on rights (including maximin-type precaution that might appeal within an ethic of human rights). Dignitarianism, it cannot be emphasised too strongly, is a red light not an amber light ethic; its credo is that we should not proceed at all (where activities compromise human dignity) rather than that we should proceed only with care.

A SLIPPERY SLOPE

Finally, a few words need to be added about a particular kind of slippery slope. This is not to repeat the much-rehearsed objection that therapeutic cloning will lead to reproductive cloning. Rather, it is draw attention to a line of thinking that leads from the desire to make people better (when mediated by instrumentalist thinking) to projects that seek to go further and make better
people. It hardly needs pointing out that what we might think about such a project rather depends on what we mean by “better”. Around the bioethical triangle, there will be very different views about the nature of better people; but my point is that, wherever we stand in the bioethical triangle, there is one version of making better people that all ethics will oppose. As a first step, consider the plea of the frustrated stem cell researcher who says: “Look, we are simply trying to find ways to make people better. Who can possibly quarrel with that?” Not only is this intuitively plausible, it finds some support in Article 14 of the UNESCO Declaration. According to this Article, humans have a right to “the highest attainable standard of health” and States have a
responsibility to promote health. Article 14 does not say that terminating embryos is legitimate for such purposes, but the pursuit of health is prima facie a good thing. We might go on, though, to question scientific and medical instrumentalism once it takes up the idea that prevention is better than cure. Stem cell therapies make sense when cure is our only option; but what if we could clean up the genome or monitor births more aggressively to prevent the problem arising in the first place? Is there not some sense in taking such steps? Possibly, there is an element of science fiction here; but suppose that science developed to the point where we could not only make people better but also make better people, that is people who are better equipped to enjoy a healthy life. Should such a programme of prevention be pursued? Should we try to make better people? For scientists and regulators alike these are hard questions. If there is a right to the highest attainable standard of health, is it permissible to opt, instead, for an unhealthy life-style? Do we undermine human dignity if we remove such choices? I am not clear about the answers; but the questions will again bring the bioethical triangle into play. According to the dignitarians, stem cell researchers already act unethically when they use human embryos as their research tools. The fact that the research is designed to make people better, to improve human welfare, offers no immunity against the charge that human dignity is compromised. If, by contrast, we accept that human embryonic stem cell research is ethically clean, we might yet sense that care needs to be exercised if it is suggested that, rather than making people better, it would be so much more efficient to make better people -people who will have better prospects for their
health and welfare, who will be better citizens, and who will be better at doing the right thing. This is not to imply that such considerations indicate that we should turn back from stem cell research. It is simply to say that there is a way of going forward with this research that could be morally disabling. So long as we drink to “good health”, and concentrate on making people better, we are a long way from going down this particular road. However, as the biosciences gather pace, it is as well to be aware of the hazards of a blinkered technocratic approach - indeed, of the hazards that the UNESCO Declaration strives to articulate.

CONCLUSION

This short paper has largely tried to map debates in bioethics, offering a commentary on the different ways in which human embryonic stem cell research is regarded, and regulated, in differently constituted ethical and legal communities. However, if we were to pull out two thoughts for further reflection, they would be the following. First, the international global agenda - or, at any rate, two starred items on that agenda - is dominated by concerns about market access (free trade) and human rights. Against the grain of globalisation, the dignitarians will, and do, resist stem cell research - although one wonders whether such resistance will extend to the reception of cellbased therapies once they are developed. But, in principle, a community that is committed to respect for human rights might also take a restrictive approach to human embryonic stem cell research. It might do this, even while acknowledging the rights of researchers and potential beneficiaries, either because it takes an extremely risk-averse view in relation to the human embryo (as a possible, albeit improbable, rights-holder) or because it fears for the indirect effects of such research in relation to our respect for one another. To be sure, such a restrictive policy might be exceptional; but there is room for debate about how far such a community can operate beyond the boundaries of mainstream judgments before its approach is rejected as irrational. Secondly, if we were in a position to make better people, in the sense that we could code people to behave in ways that we judge to be better, is this something that we should do? The attraction of managing conduct in this way is that we could produce a pattern of behaviour that gets closer to the pattern that we would expect in a community that takes its ethics seriously. However, such a managed community would not be an authentic moral community. What divides ethicists is not that they disagree about the principle of moral
community as such (unlike amoralists, they do believe in the moral life) but that they subscribe to competing principles for the governance of such communities. Wherever we stand in the bioethical triangle, we believe in communities debating their differences in an attempt to do the right thing. If the right thing could simply be designed in, if conduct could be so coded, we would have lost something distinctive about human social existence - and this would be viewed as a matter of regret from wherever we stood in the bioethical triangle. Trying to make people better, whether physically, psychologically, or morally, is a noble cause. However, it stops short of making better people. What the human dignity that underlies human rights is surely about is recognising that there is only a virtue in acting ethically when one has the option of acting unethically. This, I repeat, is not to suggest that we cannot do right for doing wrong; if we can
do right (by making people better) we should do so; but we need to be sensitive to the point at which we switch to trying, instead, to making better people; and, crucially, we need to reflect on the point at which, possibly with the best of intentions, we cross the line from doing right to doing wrong.