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

Written by Professor Roger Brownsword
School of Law, Kings College London and originally published
in the Journal of Academic Legal Studies 2005;1 05-13

On October 19, 2005, the General Conference of UNESCO adopted the Universal Declaration on Bioethics and Human Rights. Having already adopted the Universal Declaration on the Human Genome and Human Rights in 1997, and the International Declaration on Human Genetic Data in 2003, this was the third, and arguably the most ambitious of UNESCO’s attempts to “globalise” ethics in the face of increasingly globalised science and technology.

INTRODUCTION

Two aspects of the latest Declaration are particularly significant. First, UNESCO continues
to promote the idea that, while science and technology have the capacity to function as forces
for the good (making people better as well as making for a better environment for human
flourishing), scientific research and development and the application of science must be compatible with respect for human rights and human dignity. This is the position consistently pressed by UNESCO and, once again, it is reflected here - for example, in Articles 2(iv), 3(a), and 4. Secondly, while UNESCO elaborates these cosmopolitan principles, it also supports the idea of cultural diversity (see, for instance, the Recitals and Article 12). However, pluralism and cultural diversity is welcome only so long as it is consistent with the agreed cosmopolitan principles. So far so good, it might seem; however, the problem for UNESCO is not simply that the line between the cosmopolitan and the local is unclear (a problem that can be managed through notions such as “the margin of appreciation”, or the like) but that pluralism is already written into its cosmopolitan principles. Crucially, respect for human dignity not only sets limits on pushing ahead with the science, it is also open to an interpretation that puts it in tension with respect for human rights.

The paper is in five parts. First, I map the leading bioethical positions (such as those compressed
within the UNESCO Declaration) and apply them to debates about human embryonic stem cell
research. For this purpose, I sketch what is elsewhere termed the “bioethical triangle”. Secondly, I comment on the important idea of human dignity, an idea which features strongly at two points of the triangle. This leads, thirdly, to some remarks about the distinction between cosmopolitan and local ethics. Fourthly, I rely on the bioethical triangle to frame reliance on three “floating” principles in bioethical debate: namely, (i) that we should not harm others, (ii) that clinicians and researchers should act only with the free and informed consent of their patients/participants, and (iii) the so-called precautionary principle (which advocates restraint where, in a context of scientific uncertainty, there is a risk of serious (and, possibly, irreversible) damage even though the evidence is not compelling). Finally, I add some concluding remarks about a particular kind of slippery slope. Of course, slippery slope arguments abound in ethical and legal debates; and stem cell researchers will have heard many times the argument that it would be unwise to authorise therapeutic cloning because it will lead to human reproductive cloning. However, this is not the particular argument that I want to flag up. Rather, it is a concern that in our desire to make people better, and at a time when instrumentalist thinking dominates, we might go one step further and try to make better people. While this is not a reason for abandoning the attempt to make people better, it points to the danger of crossing lines that are ethically significant without realising that we are doing so.

THE BIOETHICAL TRIANGLE AND HUMAN
EMBRYONIC STEM CELL RESEARCH

If we were to try to tease out from the UNESCO Declaration, the nature of the cosmopolitan
commitments, we would find three competing ethics - the three ethical views that make up the
bioethical triangle. These are respectively the views of the utilitarians, of the proponents of human rights, and of the “dignitarian alliance”. This plurality is already contesting the legitimacy of a wide range of developments in the biosciences. Occasionally, there is a convergence between these views - as in their shared condemnation of human reproductive cloning. However, such consensus is exceptional and the ethical differences relating to therapeutic cloning and embryonic stem cell research are more typical. Briefly, this is how the different ethics play.

For utilitarians, the key is to identify the option that maximises welfare or preferences, or minimises distress, and so on. Article 4 of the UNESCO Declaration speaks this kind of language. Although utilitarians count the benefits/harms in relation to all those who are affected by an action, they restrict the calculation to those who are judged capable of experiencing pain or pleasure, having preferences and so on. A five or six day embryo, the source of stem cells, simply does not look like a sentient life form and so its interests can be ignored. It follows, for utilitarians, that there is no major problem with embryonic stem cell research; it is largely a matter of figuring out whether resources are best applied here or to other lines of inquiry - for example, to adult stem cell research or to the development of non cell-based therapies. For human rights theorists, the key is not positive or negative consequences so much as respect for individual human rights. Much of the history of bioethics hinges on ethical opposition to the idea that the interests of individuals may be legitimately sacrificed for the greater good. Article 3(b) of the UNESCO Declaration emphatically confirms this opposition. Humans have rights and they must be taken seriously. Like the utilitarians, however, human rights theorists do not usually recognise a five or six day embryo as a bearer of rights. Indeed, in the human rights tradition, an even more restrictive view is taken - even sentience does not suffice. Thus, in the recent ECHR decision of Vo v France the court declined to affirm that a six month fetus is protected by the Convention right to life. If the embryo has no rights, the only caveats that will be imposed by this ethical approach relate to the need for free and informed consent by relevant rights-holders, such as women who donate eggs or couples who donate embryos. Before sketching the third approach, that of the dignitarians, it should be noted that neither utilitarian nor human rights ethics would have any obvious reason to restrict researchers to embryos that are supernumerary (surplus to IVF requirement); and nor would it be especially relevant that the source embryo was designed in such a way that it could not develop or that stem cells could be derived from an embryo without damaging its developmental prospects. The third point of the triangle is the one to really
take note of. Here we have the dignitarian alliance, whose fundamental axiom is that human dignity must not be compromised. It is an “alliance” because there is more than one pathway to this ethic - Kantian and communitarian as well as religious. If we were to express the dignitarian perspective in general terms, we would say that human dignity is a good which must not be compromised by our actions or practices and that any action or practice that compromises this good is unethical irrespective of welfare-maximising consequences and regardless of the informed consent of the participants. Insofar as the dignitarian view expresses a religious or a Kantian approach, the duty to respect human dignity (or not to compromise human dignity) will be treated as cosmopolitan; and, because the sharp end of dignitarian ethics is to identify which
practices should be prohibited, it invites being regarded as imperialistic. Insofar as it is communitarian, the dignitarian view might be of more limited range - for example, insisting on
embryo protection at home but without arguing that all nations should do the same thing. Amongst its arguable cosmopolitan principles, dignitarianism decrees that human life should be protected and respected (from the point of conception onwards), that life should be recognised as having no price (hence, it should not be commercialised) and that life should not be instrumentalised (hence, it should not be commodified). Embryonic stem cell research falls foul of these principles (arguably, it falls foul of all three of these principles, and so compromises human dignity three times over). Hence, it is judged, by the dignitarians, to be categorically wrong.

HUMAN DIGNITY

Respect for human dignity is an extremely slippery idea. It is an idea that has been used in many
different senses but, in the current debates, it is in play as the foundation for human rights (dignity as empowerment) and as the credo of the dignitarian alliance (dignity as constraint). If the former is conspicuous in the great human rights declarations of the mid Twentieth Century, the latter is strikingly present in modern declarations that set regulatory standards for bioscience. But, it is all very confusing. For instance, when the recent United Nations Declaration on Human Cloning calls on members “to prohibit all forms of human cloning inasmuch as they are incompatible with human dignity and the protection of human life”, we find three distinct interpretive openings. First, as Bart Wijnberg has observed, the use of the phrase “inasmuch as” creates a “constructive ambiguity” in this resolution (allowing for both a narrow [“to the extent that”] and a broad [“for the reason that”] interpretation of the prohibition on human cloning). Secondly, this ambiguity reaches through to invite reading the prohibition in line with one’s favoured conception of human dignity. And, thirdly, as pointed out by several of the members who voted against adopting the Declaration, the ambiguity is repeated with reference to the
protection of human life. To be sure, the dignitarian view (contending for a broad prohibition) is in the ascendancy here. However, insofar as we view the recommendation (and any regulation expressed in such terms) from a human rights perspective, the problem is not that the drafters demand that there should be respect for human dignity and human life (no supporter of human rights could disagree with that) but that the demand is expressed in over-inclusive terms.