Genetic screening: ethical issues - Nuffield Council on Bioethics

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52 (i) (ii) (iii) a genetic register may be the starting point for genetic <strong>screening</strong>; for example, the systematic testing of relatives of individuals with fragile X syndrome or Duchenne muscular dystrophy; genetic <strong>screening</strong> may also be based on a register which is not specifically genetic in its basis; for example, registers of specific cancers or of those with severe learning difficulties; and a genetic register may be the result of a genetic <strong>screening</strong> programme; for example, a register of carriers for cystic fibrosis or sickle cell disease in a population screened for the purpose. 5.35 Consent of individuals on a register to be screened is clearly essential as stated earlier, but it is also important that individuals know that they are on the register. 5.36 Consent of individuals for long term storage of information resulting from genetic <strong>screening</strong> has also been emphasised earlier; but should this form the foundation of a genetic register, separate and specific consent should be sought for any subsequent tests or other measures. 5.37 While confidentiality of all medical information is essential, this is particularly the case for genetic registers, which may contain highly sensitive and potentially identifiable data on large numbers of individuals with, or at risk for, serious genetic disorders. 5.38 Computer-based genetic registers are subject to the Data Protection Act, but there is need for additional safeguards for all genetic registers, including storage of information in a safe place and manner, restriction of access to those specifically responsible for the register, and the removal of identifying information when data are used for research purposes. 5.39 This is an important area of concern. In our view the Department of Health should consider with health authorities and the appropriate professional bodies effective arrangements for the preservation of confidentiality, particularly in relation to genetic registers, and should issue the necessary guidance.
53 Conclusions and recommendations 5.40 We regard it as axiomatic that:- (i) (ii) individuals should normally be fully informed of the results of genetic <strong>screening</strong>, and in particular of the implications of those results for the family; and the accepted standards of the confidentiality of medical information should be followed as far as possible. 5.41 When genetic <strong>screening</strong> reveals information that may have serious implications for relatives of those who have been screened, health professionals should explain why the information should be communicated to other family members. We recommend that in such circumstances health professionals should seek to persuade individuals, if persuasion should be necessary, to allow the disclosure of relevant genetic information to other family members. They should also seek to ensure that treatment, counselling and other appropriate support are made available to those to whom such unsought information is disclosed. 5.42 We note that both the law and professional guidelines provide for exceptional circumstances, when an individual cannot be persuaded to inform family members with a legitimate right to know. In such exceptional circumstances the individual’s desire for confidentiality may be overridden. The decision can only be made case by case. We recommend that the appropriate professional bodies prepare guidelines to help with these difficult decisions. 5.43 We recommend that the Department of Health should consider with health authorities and the appropriate professional bodies effective arrangements for the preservation of confidentiality, particularly in relation to genetic registers, and should issue the necessary guidance.
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ii The broad framework provided as
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Genetic screening: ethical issues - Nuffield Council on Bioethics

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