Stigma and ineffective legislation
J. M. Clifford

Further to Haghighat (2001), I would like to point out that the impact of stigmatisation is what it was when Goffman was developing his thoughts on stigma.

The impact of the the Human Genome Project potentially reveals boundless information that is stigmatising to both individual and family, in terms of employment, education and insurance. Although Haghighat refers to legislation in this area to prevent such discrimination, existing law provides little confidence in these burgeoning areas. The UK Disability Discrimination Act 1995, specifically referring to physical or mental impairment, provides little but deficiencies in the setting of discrimination against a propensity of developing a disorder in the future. Discrimination against such individuals would not be deemed unlawful. Amendments regarding this issue were discussed in both Houses of Parliament but not implemented (Nuffield Council on Bioethics, 1998). In contrast, a number of states in the USA have prohibited the use of information about employees' genetic characteristics by employers (Yesley, 1997).

In insurance, clients who have undergone genetic tests will be required to inform insurance companies of these. Proposals to avoid the unfair use of genetic information by insurance companies were announced in November 1998. Such a scheme relies on a voluntary rather than legal framework between the Department of Trade and Industry and the Human Genetics Advisory Committee (Clarke, 1995). This may do little to allay fears that an essentially profit-making business is being expected voluntarily to operate an ethical code of practice.

We may find that genetics provides a potential source of stigmatisation. As yet, the UK has few legal safeguards in place to protect individuals, who increasingly will have to manage this information carefully, rather as the ‘ discreditable’ Goffman wrote of. Rather than legislation providing ‘institutional support’, the present situation serves only to propagate, in the public eye, a vision of a ‘genetic underclass’ (Clarke, 1995). An underclass where the stigmatising scars are invisible but their devastating effects on individual freedom are all too apparent.