Screening for fetal and genetic abnormality: social and ethical issues.

Abstract

In answer to questions raised by practitioners, an ethics of genetic screening is located in a tension between liberty and responsibility in three respects: (1) to nature and biological processes; (2) to the disposal of human life; and (3) to the relation of persons to society. Under (1), the obligation to pursue research, fundamental as well as applied, is affirmed, offering the benefit of economy with fetal life, but requiring discrimination between the beneficial, the trivial, and the bizarre. Under (2) the abortion question, when relevant to diagnosed abnormality, is discussed, not in the language of conflicting rights, but of the relation of duties to interests. Under (3) the familial and social dimensions of screening raise questions of the disclosure of information and the keeping or extending of confidences. Last comes the value placed on truth in two related areas of developing practice. In infertility treatment, the donors of gametes are required to remain anonymous. Gene tracing through families requires for its effectiveness some correspondence between assumed identity and genetic identity. This conflict of social policies should be resolved. Definitions and intent By 'screening' in the context of this discussion, I understand "any procedures undertaken in order to detect presymptomatic disease in a population".' Genetic screening I treat as a means to furthering "the main purpose of medical genetics (which) is to apply the principles of genetics to the practice of medicine so that the burden of genetic disorders can be reduced in the community".2 I observe the common agreement here to limit the discussion of screening to patients for whom there are already indications of risk. The relevant moral reasoning requires the holding in tension of a cluster of principles, each exerting moral claims. I reduce these to three. I shall then relate cases to them. A.1. The tension between human liberty and responsibility within nature and biological processes In the glib language of today's pseudo-piety, medical scientists are alleged to 'play God'. If this *Text of a paper presented at the King's Fund Forum 'Consensus and controversy in medicine: screening for fetal and genetic abnormality'. 30) November to

Review Article: Dystrophin-Related Muscular Dystrophies

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Systematic scoping review of the concept of ‘genetic identity’ and its relevance for germline modification

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The potential social impact of predictive genetic testing for susceptibility to common chronic diseases: a review and proposed research agenda

“…How should people be approached by medical authorities or health promotion agencies if a particular test were to be included in a health system as a matter of policy? These issues are addressed in Bodmer 1990;Chappie 1992;Dunstan 1988;Harper 1992b;Harper and Clarke 1990;Rutkow and Lipton 1974;Shaw 1987;Stamatoyannopoulos 1974 andRichards 1989, and are already being widely studied in relation to testing for carrier status for common recessively inherited disorders.…”

“…The general area is briefiy addressed by Michael 1992 andMoscovici andHewstone 1983, the medical field by Davison et al 1989and Gifford 1986, and specifically genetic issues by Parsons and Atkinson 1992 and Lambert and Rose, in press. The ethical and policy dilemmas conceming the availability and desirability of testing are addressed by Dunstan 1988;Takagi 1991;Murray 1991 and World Federation of Neurology Research Group on Huntington's Disease, 1990. The communication of test information through counsellors is the subject of Clarke 1991 andHarper 1988.…”

“…While overtly eugenic ideas are unfashionable in contemporary Westem political or medical circles, their spectre can be raised in such applications as, for example, termination of pregnancy when foetal genetic diagnoses indicate mental retardation (Tumer et al 1992), or providing individuals with information about their carrier status for certain conditions before they make reproductive choices (Modell and Kuliev 1992). These options, which imply the reduction of birth incidence of genetically 'flawed' individuals, are characteristic of the uncomfortable ethical landscape in which contemporary medical genetics has to operate (Takagi 1991;Murray 1991;Dunstan 1988;MuUer-Hill 1993), and much of the public discussion of the social impact of the new genetics has centred around them.…”