Genetic screening: ethical issues - Nuffield Council on Bioethics

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74 (i) (ii) first, in the case of those individuals where there is a known family history of genetic disease that can be established by the conventional questions about proposers’ families, then individuals may be asked to disclose the results of any relevant genetic tests (see paragraph 7.28); and the moratorium should apply only to policies of moderate size. The limit would be a matter to be settled between the Government and the industry in the context of arranging the moratorium. The importance of the discussions that are recommended is highlighted by the considerations set out in paragraphs 7.7 and 7.8.
75 Chapter 8 <strong>Genetic</strong> <strong>screening</strong> and public policy 8.1 By their nature, most genetic <strong>screening</strong> programmes involve large numbers of people. This is so even for programmes limited to defined groups of the population which may be at risk of developing a serious disease or transmitting it to the next generation. We have therefore attempted to assess the present level of understanding of the science of genetics and its significance for the health of individuals, as well as the potential for improving public health. 8.2 Such evidence as there is suggests that there is widespread misunderstanding of the mechanism of inheritance, in particular of the importance of recessive genes and carrier status. Much ignorance about how genetic diseases are transmitted is mixed up with notions about the inheritance of physical characteristics, such as height, eye colour etc. <strong>Genetic</strong>s can be confused with eugenics (see paragraph 8.16), and there are concerns about possible stigmatisation which may or may not have a basis in fact. 8.3 A broad public understanding of the scientific basis of medical genetics is essential if informed public policy decisions are to be taken about the introduction of genetic <strong>screening</strong> programmes. Such programmes, as we have emphasised throughout our report, have both an individual and a public dimension. Public understanding of genetics 8.4 If an individual is to be well enough informed to be able to give consent to genetic <strong>screening</strong>, he or she needs to have some general understanding of genetics. This means that the public as a whole needs to have a greater knowledge and awareness of the genetic processes that can affect us all.
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any major ethical
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Genetic screening: ethical issues - Nuffield Council on Bioethics

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