英文基因数据库：全世界的共同财产

RUTH CHADWICK and SARAH WILSON GENOMIC DATABASES AS GLOBAL PUBLIC GOODS? � ABSTRACT. Recent discussions of genomics and international justice have adopted the concept of ‘global public goods’ to support both the view of genomics as a benefit and the sharing of genomics knowledge across nations. Such discussion relies on a particular inter- pretation of the global public goods argument, facilitated by the ambiguity of the concept itself. Our aim in this article is to demonstrate this by a close examination of the concept of global public goods with particular reference to its use in the context of genomic databases. We contend that the argument for construing genomics as a global public good depends on seeing it as a natural good by focusing on features intrinsic to genomics knowledge. We shall argue that social and political arrangements are relevant and that recognising this opens the door to construing the use of global public goods language as a strategic one. KEY WORDS: genomics, genomic databases, global public goods, international justice INTRODUCTION In the literature relating to discussions of genomics and international justice, the concept of ‘global public goods’ appears to have been adopted as one strategy to support the sharing of genomics knowledge across nations. However, such discussion relies on a particular interpretation of the global public goods argument, an interpretation that is open to ques- tion. This, in part, would seem to be a result of the ambiguity of the concept itself, which facilitates its use in this way. Our aim in this article is to demonstrate this by a close examination of the concept of global public goods with particular reference to its use in the context of genomic databases. We shall argue that the success of the argument that genomics and genomic databases are global public goods depends on whether a � The support of the Economic and Social Research Council (ESRC) is gratefully acknowledged. The work was part of the programme of the ESRC Research Centre for Economic and Social Aspects of Genomics. This paper was also produced as one of the deliverables of the ELSAGEN project (Ethical, Legal and Social Aspects of Human Genetic Databases: A European Comparison), financed between 2002 and 2004 by the European Commission’s 5th Framework Programme, Quality of Life (contract number QLG6-CT-2001-00062). We gratefully acknowledge the support of the European Community. The information provided is the sole responsibility of the authors; the Community is not responsible for any use that might be made of data appearing in this publication. Res Publica 10: 123–134, 2004. © 2004 Kluwer Academic Publishers. Printed in the Netherlands. 124 RUTH CHADWICK AND SARAH WILSON purported global public good is a natural or a social good; on whether there are features intrinsic to the object which ground the description of global public good, or not. The argument for construing genomics as a global public good depends on seeing it as a natural good by focusing on features intrinsic to genomics knowledge. We shall argue that social and political arrangements are relevant and that recognising this opens the door to construing the use of global public goods language as a strategic one. The HUGO Statement on Human Genomic Databases1 ,2 (December 2002) defines a genomic database as ‘a collection of data arranged in a systematic way so as to be searchable. Genomic data can include inter alia, nucleic acid and protein sequence variants (including neutral polymorphisms, susceptibility alleles to various phenotypes, pathogenic mutations), and polymorphic haplotypes.’ The type of database that is most commonly assumed in discussions of genomic databases, however, is more accurately described as a population biobank. In these biobank databases, a range of further information relating to the individuals whose genomic data is stored, complements that genomic data. For example, the UK Biobank will hold information that allows it to explore how the interaction between genes, lifestyle and environmental factors affects people’s health. It is this additional, non-genomic, data that differentiates population biobanks from other types of database, and the focus of this article will be on this type. Another type of database includes human genome mutation (or variation) databases, which, as their name implies, relate to mutations within genes: there is a large number of these mutation databases, which describe vari- ations within genes that lead to inherited diseases. A third type of database, police DNA databases, is really a database in only a very crude sense. It is mentioned here as it may be confused in the public mind with the databases examined in this piece. This DNA database is currently used only for “fingerprinting” or identifying an individual, and tells you nothing further about the individual or their genomic make-up.3 The difference between different types of database will be found to be extremely pertinent to whether or not they count as global public goods. 1 http://www.hugo-international.org/hugo/HEC_Dec02.html. Accessed on 18 Novem- ber 2003. 2 One of us, Ruth Chadwick, is Vice-Chair of the HUGO Ethics Committee which issued the Statement on Human Genomic Databases. 3 Although in principle it has the potential to be used for other purposes. GENOMIC DATABASES AS GLOBAL PUBLIC GOODS? 125 GLOBAL PUBLIC GOODS Global public goods are defined as goods which are non-rivalrous and non- excludable.4 They are enjoyable by all without detriment to others. The steps in the argument that genomic databases are global public goods may be set out as follows: (1) Public goods are goods which are non-rivalrous and non-excludable. (2) Global public goods are public goods the enjoyment of which is not limited to any specific geographical area. (3) Knowledge is the archetypal global public good. (4) Genomics is a form of knowledge. (5) Genomics knowledge is a global public good. (6) A fortiori, genomic databases, in so far as they contain genomics knowledge, are a global public good. Public Goods are Goods Which are Non-rivalrous and Non-excludable In subjecting this account to critical analysis it is necessary first to explore further the concept of a public good. As already stated, the two key aspects that describe or define a good as public are that it is ‘non-excludable’ and ‘non-rivalrous’. A good is non-excludable if persons cannot be excluded from accessing it, and non-rivalrous if one person’s use of the good does not diminish the supply of that good. An example frequently cited is that of a lighthouse. Intentionally or not, a lighthouse lights the sea for everyone: no one can be prevented from receiving the benefits of the light, and the light cannot be diminished no matter how many persons are benefited by it. The two elements in the term, ‘good’ and ‘public’ need further elucidation, however. Good In what ways are the items under discussion deemed to be ‘good’? In a neutral sense, ‘good’ might simply mean an object to be enjoyed. In the present context it is important to address the extent to which the good in question is being construed normatively or evaluatively, however. The evaluative element relates to whether the item in question is deemed to be a good, rather than a bad. Genomic databases may be non-excludable and 4 The literature on public goods is extensive, and the terminology is not always consistent. However, the concepts themselves are standard ones. For both a basic intro- duction and a comprehensive analysis of issues relating to public goods, see, for example, R. Cornes and T. Sandler, The Theory of Externalities, Public Goods and Club Goods (Cambridge: Cambridge University Press, 1986). 126 RUTH CHADWICK AND SARAH WILSON non-rivalrous when freely available but that does not necessarily mean they are a good – pornography and bomb-making information are apparently similarly available, yet may more likely be described as a bad rather than a good. It will therefore be pertinent to consider in what ways genomic databases might be viewed as a good. Are they a good in themselves, or as a means to achieve, for example, better health, where good health is seen as a public good? Further exploration of this issue follows below. Whereas the evaluative notion relates to whether a good – that is the item or thing – is evaluated as good, there is room for a further, normative, assessment and this relates to whether that item or thing is so important that people ought to have it. Thus the evaluative or normative elements are connected in some economic and philosophical discussions, in that there is a concern with goods that are considered too important to be left to the market to supply, such as the provision of national defence. Thus we find discussions of whether a good should be a public (rather than a private) good (which must depend on something else). If global public goods were such by virtue of features intrinsic to the objects in question, this discussion would not be possible. This aspect is reflected in the way in which the language of global public goods appears to have been adopted as a strategic concept in arguing for international collaboration in genomics research, and for global benefit-sharing of its results. Public The ways in which a good is defined as public rather than private (and the extent to which it is so) are obviously important. Again, some of the literature seems to take the two concepts of non-excludability and non- rivalry as making it true by definition that something is a public rather than a private good. For example, Thorsteindottir et al. appear to suggest that because genomics knowledge is non-excludable and non-rivalrous, it must be a public good, reaching this conclusion on the grounds that ‘genomics is principally about knowledge, which is commonly conceived to be the archetypal public good’.5 This notion of knowledge as the archetypal public good is explored further below to help clarify the concepts under discussion. Economic definitions of public goods, however, lead us to consider the inadequacies of a purely definitional account by introducing the relevance of externalities. Externalities are benefits (positive externalities) or burdens (negative externalities) that are not restricted to the initial owner or creator of a ‘good’; they are an ‘overspill’ or a side effect. Kaul et al. give the 5 H. Thorsteindottir et al., ‘Genomics – a Global Public Good?’, The Lancet 316 (2003), 891-2, p. 892. GENOMIC DATABASES AS GLOBAL PUBLIC GOODS? 127 example of education, which has benefits to employers and society beyond the benefits to the individual who receives the education: ‘this difference between the public and the private benefits is called an externality’.6 A health-related example is that of vaccination against infectious disease: vaccination not only benefits the individual who receives the vaccine, but society as a whole benefits from the virtual eradication that results when herd immunity occurs. A further externality, more clearly relevant to vaccination in developing countries, would be the resources saved by the resulting improvements in health and mortality rates.7 There is a further aspect to consider in exploring the ‘public’ nature of public goods, which relates to the provision or supply of public goods. This is primarily an economic definition of a public good, although often found in philosophical and political discussions of public goods. Whilst the economics literature contains complicated explanations and detailed accounts of public goods, the key element of relevance here is that goods are public because there is insufficient incentive for the market to provide them privately. This is because the non-excludable nature of an item means that it is not possible to charge very much, if anything at all, for it, as persons will not pay for an item they can access for free. That is, the property of non-excludability leads to a “free-rider” problem, so, to return to our earlier example, once a lighthouse is lighting the sea, no one can be prevented from benefiting from it, and persons cannot therefore be charged to make use of the light. Global Public Goods are Public Goods the Enjoyment of Which is Not Limited to Any Specific Geographical Area A global public good is one which transcends national and international boundaries and whose effect is not limited to a localised geographical area (as it is in the case of a lighthouse). The ‘global’ aspect of global public goods is obviously very important when relating the concept to issues of international justice. Kaul et al. have put forward a multidimensional definition of the global nature of global public goods. Their definition encompasses not only a geographical dimension but also necessitates that goods benefit a ‘broad spectrum of the global population’ in terms of 6 Eds. I. Kaul, I. Grunberg and M.A. Stern, Global Public Goods (New York, Oxford: Oxford University Press, 1999). 7 Vaccination is obviously a contentious issue, but is useful in illustrating the concept of externalities. Vaccination also clearly illustrates the free-rider problem: whilst vaccination levels are high, and herd immunity is in place, a small percentage of individuals can choose not to vaccinate. That is, they are able to “free-ride”, to avoid infection without any of the perceived risks associated with vaccination; yet if there are too many free-riders there will no longer be herd immunity, and the system begins to fall apart. 128 RUTH CHADWICK AND SARAH WILSON socio-economic groups, and also ‘meets the needs of present generations without jeopardizing those of future generations’.8 This definition allows that a global public good need not benefit the entire global population, and highlights that benefiting different national or geographical areas alone is insufficient. The inclusion of socio-economic groups as a further defining criterion is particularly pertinent to discussions around interna- tional justice, and the relationship between this aspect and the databases under discussion is referred to in the final section of this paper. It should be noted that this definition of ‘global’ relates to the impact or affect of a public good, not to any initial ‘ownership’ or contribution made to that good. This is in contrast to, for example, HUGO statements relating the concept of global public goods to the human genome as part of the common heritage of humanity. Similarly, the UK Government website on International Development suggests that ‘the term “international public goods” partially adapts this concept [of public goods] to a global level; in that certain things are regarded as belonging to all people in common. For example, the human genome, plant and animal biodiversity . . . .’9 The notion of common ownership is one that will be returned to in later sections of this paper. Knowledge as the Archetypal Global Public Good When we consider knowledge as the archetypal global public good, it becomes even more apparent that it is necessary to consider the differ- ence between a natural good and a social good. While it may be tempting to suggest that knowledge is a global public good by definition, social arrangements may affect the extent to which knowledge is enjoyable by all. Whilst knowledge is incontrovertibly non-rivalrous – that is, it will not disappear, no matter how many people make use of it – in terms of excludability it varies along continuum from fully non-excludable to almost fully excludable. Knowledge generally, and in the specific instance of genomics knowledge, is illustrative of a continuum from public to private, excludable to non-excludable, along which goods may be placed. Most existing knowledge is non-excludable, providing that one has the appropriate access goods: for example access to the Internet, to books 8 I. Kaul, I. Grunberg and M.A. Stern, ‘Defining Global Public Goods’, in eds Kaul, Grunberg and Stern, op. cit., 2–19, p. 11. 9 http://www.globalisation.gov.uk/GlossaryGtoJ.htm. Note that there is a distinction between ‘having things in common’, which implies equal ownership, and ‘common owner- ship’, which frequently indicates differential ownership; and consider the connections with the related concept of common-pool resources. GENOMIC DATABASES AS GLOBAL PUBLIC GOODS? 129 and to journals, which in turn depends upon the ability to read, or the ability to use the relevant language and so forth. However, new and devel- oping knowledge and technologies are often very much ‘excludable’. The existence of Intellectual Property rights, patenting and industrial secrecy highlights the private and profitable nature of certain types of knowledge. Joseph Stiglitz suggests that such mechanisms are in fact a result of the public nature of knowledge, and that they exist to encourage innovation by making the production of knowledge profitable. As he points out, this means that knowledge is in fact an impure public good.10 This discus- sion shows that there is no simple way of defining global public goods in terms of their ‘properties’, and that even the ‘archetypal’ public good of knowledge is an impure good. Genomics is a Form of Knowledge Even if we accept that knowledge is the archetypal public good, the next step in the argument depends on accepting that genomics is a form of knowledge. According to the HUGO definition of ‘database’, which defines a genomic database in terms of data such as sequence information, this may seem plausible. There is a difference, however, between ‘knowl- edge’ and ‘information’. It is not clear in what sense sequence information is knowledge. Where databases which are biobanks, containing samples, are concerned, it is even less clear what the relevant type of knowledge is. Genomics: A Global Public Good? Let us suppose that genomics can legitimately be described as a form of knowledge. The fact remains that there has been enormous scepti- cism over the purported benefits of the Human Genome Project. On both the individual and societal level there has been a growing interest in the ‘right not to know’. For the individual, knowledge may be a burden rather than a good; for society, there may be some research that should not be undertaken because of potential adverse social consequences.11 Of course there are strong expressions of a different position, namely that the human genome is the common heritage of humanity and should benefit all humanity; that the benefits should be shared (HUGO). However, the human genome, and information relating to the human genome, is not of much use without further information and technology, 10 J.E. Stiglitz, ‘Knowledge as a Global Public Good’, in eds Kaul, Grunberg and Stern, op. cit., 308–25, p. 308. 11 Cf. eds R. Chadwick et al., The Right to Know and the Right not to Know (Aldershot: Avebury, 1997). 130 RUTH CHADWICK AND SARAH WILSON and as such, even if it were a public good, it is not much good on its own. Nevertheless, it is important to assess the genome in this account, as the (non-rivalrous and non-excludable) human genome is the basis for the information held in the databases, and also the basis for some of the arguments claiming that genomics knowledge is a global public good. The criticism of usefulness might also be applied to genomic information in general, and genomic databases specifically. Whilst they may provide the basis for many useful discoveries, such opportunities are only open to those with access to the appropriate technologies. However, this does not preclude them being defined as public goods. Public? Looking first at the human genome, it can be seen that the human genome has both public and private characteristics. That is, in terms of informa- tion about the genome it may be said to be public in the way that much information is, as it is non-rivalrous. Furthe