Genetic screening: ethical issues - Nuffield Council on Bioethics

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64 Conclusions and recommendations 6.27 At present, the use of genetic <strong>screening</strong> by employers in the UK does not appear to be a cause for concern. We have found evidence of only one existing <strong>screening</strong> programme : that programme can be justified quite readily on the grounds of safety, not only of those being screened but also of third parties. Nevertheless we recognise that the matter needs to be kept under review. We recommend that the Department of Employment keeps under review the potential use of genetic <strong>screening</strong> by employers. 6.28 Subject to prior consultation with workplace representatives, and with, as necessary, the Health and Safety Commission, we recommend that genetic <strong>screening</strong> of employees for increased occupational risks ought only to be contemplated where:- (i) (ii) (iii) there is strong evidence of a clear connection between the working environment and the development of the condition for which genetic <strong>screening</strong> can be conducted; the condition in question is one which seriously endangers the health of the employee or is one in which an affected employee is likely to present a serious danger to third parties; the condition is one for which the dangers cannot be eliminated or significantly reduced by reasonable measures taken by the employer to modify or respond to the environmental risks. Although it may be appropriate to introduce a genetic <strong>screening</strong> programme on these limited grounds, it should only be done if accompanied by safeguards for the employee, and after consultation with the coordinating body recommended in paragraph 9.7.
65 Chapter 7 Insurance Introduction 7.1 The subject of genetic <strong>screening</strong> in relation to insurance is not new. In 1935 R A Fisher addressed the International Congress of Life Assurance Medicine on the topic, noting that “linkage groups should be sorted out, in order to trace the inheritance and predict the occurrence of other factors of greater individual importance, such as those producing insanity, various forms of mental deficiency, and other transmissible diseases.” 1 However, it is only during the past few years that molecular techniques have provided the opportunity to realise this goal. We are now seeing rapidly increasing numbers of serious disease-causing genes mapped and isolated, with a corresponding ability to predict or exclude their presence in family members at risk and in the general population. 7.2 At present, much of our experience of the insurance-related <strong>ethical</strong> <strong>issues</strong> comes from Huntington’s disease. This dominantly inherited disease is rare (affecting less than 1 person in 10,000), of late onset and can be predicted with a high level of certainty. Nevertheless, many of the <strong>issues</strong> it raises also apply to other diseases which may have a genetic basis. 7.3 Insurance is unlikely to create any new <strong>ethical</strong> <strong>issues</strong> in connection with genetic disorders whose symptoms are already manifest at the time of application. Standard insurance proposal forms have for many years asked about recent medical treatment as well as relevant elements of family history. Insurance companies already require applicants to give consent to the companies’ access to medical records. These records may now, and will increasingly in the future, include the results of genetic <strong>screening</strong>. New <strong>ethical</strong> <strong>issues</strong> are most likely to arise as testing for late onset disorders becomes more widespread, and as genetic <strong>screening</strong> increasingly identifies individuals with a predisposition to develop certain diseases, though they will not necessarily know of any relevant family history.
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