Equality of access and discrimination

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In his recent book entitled Our posthuman future, Francis Fukuyama puts forward the fairly uncon-troversial position that the basis upon which groups of people have historically been denied access, dignity and equal rights is through discrimination and prejudice (Fukuyama, 2002). In the nineteenth and early twentieth centuries, this manifested itself in assumptions that women were less rational, emotional, and therefore unsuited to professions or politics, and that immigrants from eastern and central Europe were less intelligent.79 The eugenics movement at that time essentially relied upon the institutionalization and 'scientific legitimization' of such discriminatory attitudes in its programmes and proposals for sterilization, segregation and elimination of those with hereditary 'defects'. The risk we face with the advance of new genetic diagnostic technologies is that our improved ability to identify 'defects' will lead to increasing proportions of the population being labeled and treated as disabled or damaged, and therefore declared, at an embryonic stage, as worth avoiding. As the ability to discriminate, based on a host of genetic characteristics, broadens with the refinement of the technology, so, potentially, will the number of current and 'prospective' people susceptible to discriminatory practices and attitudes (Larson, 2002, pp. 923-33).

Perhaps a second, pertinent issue to be addressed, in order to (at least) avoid the creation of new societal divisions, is the danger of developing narrower genetic variations within distinct socioeconomic groups as a consequence of access to treatments and technologies being based on private financial resources (Fukuyama, 2002).

79 One of the bases on which the need for the American

Immigration Restriction Act 1924 was argued.

Historically, there has existed a degree of socially and economically biased genetic selection through the choice of persons in marriage, divisions of space and association within communities, and the provision of broader and better opportunities to children from different backgrounds. In the future, however, limited access to genetic technologies and therapies presents the danger of embedding not only social advantages, but genetic ones as well, and the effective creation of a 'genetic upper class'. If genetic testing is not a generally accessible service, as part of a universal health programme, but is only available to those who can afford it, increasing inequalities will undoubtedly follow from the concentration of genetic 'problems' among the poorer members of the community (WHO, 2002b, p. 151). A strong argument in favour of universal access to basic healthcare being reinforced, and broadened to ensure principles of 'genetic equity and justice', is that, the 'genetic lottery' aside, inherited traits and genetic risks are simply morally undeserved.

Serious concerns have also been raised about the potential uses of PGD and genetic screening for non-therapeutic applications, like gender selection, and the possibility of its perpetuating or even amplifying gender discrimination. Accepting and endorsing the concept that perfectly healthy embryos would be discarded, or pregnancies terminated, merely because the fetus was the 'wrong' gender is prima facie unethical. Bioethi-cists, however, tend toward unanimous agreement that an argument exists in favour of gender selection when the motivation is the screening out of gender-linked genetic diseases (so-called 'therapeutic' selection). Some even propose that it might be an acceptable consideration for achieving gender-balanced family planning.80

80 The legal position in the United Kingdom on the use of PGD for family planning purposes, and in particular, the selection of a potential ''saviour sibling'' was determined by the House of Lords in the recent case of R ( on the application of Quintavalle) v. Human Fertilisation and Embryology Authority [2005] UKHL 28.

Purely non-therapeutic motivations, however, are almost universally considered unethical, as evidenced in the strongly worded exclusionary references in medical guidelines and international protocols. The World Medical Association's Declaration of Helsinki states, in Article 23, for example, that medical research in tandem with medical care should only be undertaken if it is justified by potential diagnostic and therapeutic value (WMA, 1964). The Australian Medical Association's Position Statement on Human Genetic Issues (1998) is even more unequivocal, stating that any eugenic practices constitute violations of human rights, and that any genetic testing on preimplantation embryos should be limited to ''fatal or seriously and permanently disabling diseases.'' Further, that it is ''not ethical to practise genetic selection on the basis of gender'', open only to the exception of avoiding gender-related disease (Australian Medical Association, 1998).

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