ABSTRACT
Despite this rather benign account of genetics it remains the case that the search for genetic information and associated products is in its own way highly controversial. Nor is this is only (or even predominantly) the case in respect of the diagnostic capacities and therapies that might emerge from advances in genetic knowledge. It can also relate simply to the collection or possession of genetic information. Concerns, for example, about the possibility of discrimination based on genetic information are widespread; will employers and insurers unfairly differentiate between us and others because, for example, of a predisposition to certain genetic conditions? Equally, the growth of genetic databases, which is considered elsewhere in this book, also raises concerns. For example, McHale notes that ‘[f]or some people the prospects of their genetic information being stored and used for scientific research purposes may be regarded as objectionable, unethical and as an infringement of their human rights’ (McHale 2004: 71). Thus, the mere existence of information about genetic make-up is sufficiently bothersome to make some people anxious. While some see the so-called genetics revolution as the holy grail of modern medicine, others approach the entire area with trepidation. Given the volumes of literature written on the subject, it might be thought that the
genetics ‘revolution’ is more profound than any other scientific or human enterprise witnessed over the centuries – more life-changing than the industrial revolution and more exciting than the space race. The perception of genetics as uniquely problematic dogs attempts to focus clearly on the prospects that advances in this area may hold out in terms of therapies – even cures – and epidemiological and other research. Concern about
the potential uses and abuses of genetic information resonates widely throughout different populations. It is, of course, often the case that scientific and clinical advances are greeted with
anxiety rather than excitement. One need only think about the hyperbolic panic spawned by the birth of Dolly, or the fervour with which some people resist the developments in assisted reproduction, to appreciate that concerns – whether or not realistic – about scientific advances are commonplace and this is not confined simply to the general public whose information may be skewed by uninformed or misleading coverage or the polarised views of pressure groups – even scientists themselves. In another context, Lee (2005) claims that anxieties about scientific progress are ‘not driven by general public concerns, but by the fears of the scientific and political elite’, which ‘has expressed caution and concern at every turn, and encouraged a particular kind of debate that gives great prominence to notions of vulnerability, and the potential problems caused by unintended consequences of new developments’. In part as a result of this reluctance to embrace progress without question (which may
be entirely intelligible), scientists have been thrust into the limelight of public and legal scrutiny. They now find themselves centre stage actors rather than the white-coated backroom players of the public imagination. Political ideologies, and the need for votes, have left politicians somewhere in the middle, struggling between esoteric science and public anxieties. Of course, this should be unsurprising. As Murray has said, ‘[e]merging biotechnologies are sure to have social, political, and material effects the likes of which we have not yet even begun to imagine’ (Murray 2007: 13). The fact that these consequences seem inevitable leads to the question as to how, if at
all, genetics should be controlled or regulated. Should science simply be allowed to proceed as it chooses, driven by the scientific imperative to discover, or should the possible outcomes be subject to public scrutiny, perhaps even micro-managed to ensure individual and collective safety or appease public fears? It is arguably our inability to conceptualise adequately just where genetic knowledge might take us that generates the effects to which Murray refers. Moreover, global industries have a vested interest in the products of the genetic revolution, intruding commerce into existing legal, social and ethical considerations. As will be seen, the option of non-engagement is not a realistic possibility for the state. Even if only because of the existence of laws designed to govern commercial transactions, some regulation is inevitable. How light or heavy handed the regulatory touch can and should be is, however, more open to debate than is its inevitability. What follows is an account of the kinds of regulation that may be possible, but it must
be borne in mind that genetics is not a single enterprise and that different approaches might be necessary or more appropriate to fit different situations. For example, the extent to which we regulate the storage and/or uses of genetic information, and the kind of regulatory regime that is most effective, may bear no relationship to how we deal with the application of any genetic therapies that become available. The former, for example, might best be overseen by a legislative regime or managed by some form of advisory committee, while the latter might be adequately controlled by a combination of professional ethics and laws about consent to medical treatment. In this chapter, it will clearly not be possible to enter into every aspect of the genetic revolution and consider the appropriate regulatory regime for each; rather, some possible regulatory models will be considered and related to different aspects of genetics. Before considering the role of regulation or law further, it is worth asking some fun-
damental questions. For example, what, if anything, is different about genetics? Why is it
often separated from other medical advances and therapies, sometimes resulting in calls for distinct or special regulation? After all, there are many areas of scientific inquiry and clinical practice which have profound effects on individuals and groups. Yet, it seems, genetics holds a particular place in the minds of public and politicians alike, generating concerns which may (or may not) turn out to be disproportionate to the actual risks posed. This is particularly evident in what has come to be called ‘genetic exceptionalism’. Although legislation has not (yet) proved to be the dominant way of regulating
genetics, there is one area in which it has played an important role, particularly in the United States: that is, in the context of discrimination. In an effort to reduce or obviate the potential for discrimination, particularly in the areas of employment and insurance, a number of states have passed legislation specifically targeting genetics. However, many believe that such legislation is at best ineffective and at worst divisive. Why, they ask, should genetics be singled out for special treatment? If insurers and employers are inclined to discriminate they can already do so based on other health-related, but nongenetic, information. In addition, Rothstein points to the fact that ‘[g]enetic-specific laws … reinforce the stigma of genetic disorders (by treating them differently from nongenetic conditions) and ignore the underlying social problems that genetic privacy and discrimination exemplify’ (Rothstein 2005: 30). Suter also addresses the problems associated with genetic exceptionalism, specifically that it ‘leads to unintended inequities between individuals and classes, which raises serious questions about the propriety of public policy based on genetics exceptionalism’ (Suter 2001: 671). Thus, he concludes, ‘[t]he presumption that genetic information is unique is severely tested by the fact that no sharp line divides genetic from nongenetic information’ (ibid.: 701). Even if drawing distinctions between genetic and non-genetic information could be
justified, it is also argued that such exceptionalism is in any case ineffective. It has been said that ‘genetic-specific laws have limited value in preventing or redressing harms caused by the uses and disclosures of genetic information’ (Rothstein 2005: 30). Such laws, therefore, may not only stigmatise genetic information and conditions which are genetically influenced, they also fail to tackle root and branch the social and political causes of discrimination and reinforce the public’s concerns about genetic information in general. Finally, this kind of legislation, it is said, ‘supports the fiction that there is such a thing as a “normal” genotype, and that the goal is to change the treatment of people who deviate’ (Wolf 1995: 348).
