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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83<br />
Chapter 9<br />
Introducti<strong>on</strong> and implementati<strong>on</strong><br />
of genetic <str<strong>on</strong>g>screening</str<strong>on</strong>g> programmes<br />
9.1 Most existing genetic <str<strong>on</strong>g>screening</str<strong>on</strong>g> programmes are at the pilot stage.<br />
The populati<strong>on</strong>-wide <str<strong>on</strong>g>screening</str<strong>on</strong>g> programmes for phenylket<strong>on</strong>uria<br />
(PKU) and for rhesus blood group were introduced many years<br />
ago <strong>on</strong> a judgement of clinical utility and with encouragement from<br />
the Department of Health.<br />
9.2 For reas<strong>on</strong>s emphasised in Chapter 8, a careful review will be<br />
required of the more difficult <str<strong>on</strong>g>ethical</str<strong>on</strong>g> c<strong>on</strong>siderati<strong>on</strong>s arising from<br />
future genetic <str<strong>on</strong>g>screening</str<strong>on</strong>g> programmes that cover the whole<br />
populati<strong>on</strong>. By whole populati<strong>on</strong> we do not necessarily mean the<br />
populati<strong>on</strong> of the entire UK. Some programmes which have<br />
progressed bey<strong>on</strong>d the pilot stage may be introduced to cover the<br />
whole of the populati<strong>on</strong> being screened in a particular health<br />
regi<strong>on</strong> or geographical locati<strong>on</strong>. In effect, they are being<br />
introduced into routine practice. We believe the introducti<strong>on</strong> of<br />
such programmes should, however, be subject to the same<br />
stringent review. Such a review should examine for each<br />
c<strong>on</strong>diti<strong>on</strong> for which it is proposed to screen whether:-<br />
(i)<br />
(ii)<br />
(iii)<br />
(iv)<br />
adequate pilot studies have been undertaken. We would<br />
expect that all pilot studies would have been carried out as<br />
research procedures and as such have been examined and<br />
authorised by the appropriate local research <str<strong>on</strong>g>ethical</str<strong>on</strong>g><br />
committees;<br />
the <str<strong>on</strong>g>ethical</str<strong>on</strong>g> principles relating to adequate informati<strong>on</strong> for<br />
c<strong>on</strong>sent, adequate counselling and the necessary protecti<strong>on</strong><br />
of c<strong>on</strong>fidentiality can be applied in a routine situati<strong>on</strong>;<br />
the programme will be subject to c<strong>on</strong>tinuing evaluati<strong>on</strong>;<br />
and<br />
due attenti<strong>on</strong> has been paid to whether the cost of the<br />
programme will be justified by the likely gains in knowledge<br />
and experience.