Genetic screening: ethical issues - Nuffield Council on Bioethics

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40 Conclusions and recommendations 4.28 We do not agree with some recent commentators who have taken the view that so much information is necessary for individuals or couples invited to accept <strong>screening</strong> for a genetic disease that it is not practicable to obtain truly informed consent at all. Provided that the aim is to provide adequate information, with opportunities for reflection, questioning and further explanation before consent is given, it should be possible to obtain consent in a normal clinical setting. The communication of information is at present likely to be easiest, and best understood, in the context of having children, including preconception and antenatal stages. It should, however, become established outside this framework. We discuss the importance of education in human genetics in Chapter 8 on Public Policy. 4.29 We recommend that adequately informed consent should be a requirement for all genetic <strong>screening</strong> programmes. The voluntary nature of the <strong>screening</strong> process must be emphasised. Adequate information must be provided for all those being invited to enter a genetic <strong>screening</strong> programme and should include information about the implications for other family members. Information for all genetic <strong>screening</strong> programmes is best delivered in both written and oral form. 4.30 We recommend that counselling should be readily available for those being genetically screened, as well as for those being tested on account of a family history of a genetic disorder. Counselling should be available at all stages of the <strong>screening</strong> process. This will require the diffusion of an understanding of genetics (at present mainly confined to genetic counsellors) in particular among those engaged in primary health care. The resource implications, including the need to train large numbers of practice nurses and health visitors in the subject matter and the basic principles of counselling, need to be assessed within the broader context of the expansion and extension of primary care. 4.31 Screening of individuals who are unable to give properly informed consent (minors, the mentally ill and those with severe learning difficulties) require special safeguards (paragraphs 4.24 - 4.26).
41 Chapter 5 The results of genetic <strong>screening</strong> and confidentiality Introduction 5.1 In this chapter we deal with questions relating to the handling of the results of genetic <strong>screening</strong> and the safeguarding of the information obtained. These questions are particularly complex in the area of genetic <strong>screening</strong>, because (as noted in paragraph 4.2) <strong>screening</strong> may reveal information not only about those who have given their consent to <strong>screening</strong>, but about members of their families who have not. <strong>Genetic</strong> <strong>screening</strong> has to take account not only of the way in which difficult information is to be disclosed to individuals who have been screened, and ways in which the confidentiality of data is to be secured, but also of the interests of family members who have not been screened. Family members may have a strong interest in disclosure of information that is closely relevant to their own genetic make-up, and also in such information being disclosed promptly and in sensitive and effective ways. Disclosure to the individual 5.2 After undergoing genetic <strong>screening</strong>, or indeed any other form of testing, an individual should normally be fully informed of the results, both positive (ie abnormal) for the disorder being screened for, or negative (ie no defect is found). 5.3 Difficulties can arise when the <strong>screening</strong> process yields results which are unexpected, unwanted, and have not been covered by consent. For example, a sex chromosome abnormality may be revealed when carrying out prenatal testing for Down’s syndrome, or a different inherited disease may show up on a test designed for another purpose. To fail to disclose a serious disease accidentally discovered by testing for which consent had not been explicitly given raises <strong>ethical</strong> problems. To reveal findings affecting an individual which will not have any clinical implications and may provoke anxiety requires careful individual consideration. Sometimes information may cause distress to the family, although
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10.20 We recommend that the Departm
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