Genetic screening: ethical issues - Nuffield Council on Bioethics
Genetic screening: ethical issues - Nuffield Council on Bioethics
Genetic screening: ethical issues - Nuffield Council on Bioethics
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53<br />
C<strong>on</strong>clusi<strong>on</strong>s and recommendati<strong>on</strong>s<br />
5.40 We regard it as axiomatic that:-<br />
(i)<br />
(ii)<br />
individuals should normally be fully informed of the results<br />
of genetic <str<strong>on</strong>g>screening</str<strong>on</strong>g>, and in particular of the implicati<strong>on</strong>s of<br />
those results for the family; and<br />
the accepted standards of the c<strong>on</strong>fidentiality of medical<br />
informati<strong>on</strong> should be followed as far as possible.<br />
5.41 When genetic <str<strong>on</strong>g>screening</str<strong>on</strong>g> reveals informati<strong>on</strong> that may have serious<br />
implicati<strong>on</strong>s for relatives of those who have been screened, health<br />
professi<strong>on</strong>als should explain why the informati<strong>on</strong> should be<br />
communicated to other family members. We recommend that in<br />
such circumstances health professi<strong>on</strong>als should seek to<br />
persuade individuals, if persuasi<strong>on</strong> should be necessary, to<br />
allow the disclosure of relevant genetic informati<strong>on</strong> to other<br />
family members. They should also seek to ensure that<br />
treatment, counselling and other appropriate support are made<br />
available to those to whom such unsought informati<strong>on</strong> is<br />
disclosed.<br />
5.42 We note that both the law and professi<strong>on</strong>al guidelines provide for<br />
excepti<strong>on</strong>al circumstances, when an individual cannot be<br />
persuaded to inform family members with a legitimate right to<br />
know. In such excepti<strong>on</strong>al circumstances the individual’s desire<br />
for c<strong>on</strong>fidentiality may be overridden. The decisi<strong>on</strong> can <strong>on</strong>ly be<br />
made case by case. We recommend that the appropriate<br />
professi<strong>on</strong>al bodies prepare guidelines to help with these<br />
difficult decisi<strong>on</strong>s.<br />
5.43 We recommend that the Department of Health should<br />
c<strong>on</strong>sider with health authorities and the appropriate<br />
professi<strong>on</strong>al bodies effective arrangements for the<br />
preservati<strong>on</strong> of c<strong>on</strong>fidentiality, particularly in relati<strong>on</strong> to<br />
genetic registers, and should issue the necessary guidance.