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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future decisi<strong>on</strong>s about having children could be seriously affected<br />
if informati<strong>on</strong> is c<strong>on</strong>cealed. Unexpected informati<strong>on</strong> can present<br />
<str<strong>on</strong>g>ethical</str<strong>on</strong>g> dilemmas for which there are no easy answers, or indeed<br />
any correct answers.<br />
5.4 Even when the result has been obtained, the sample may be<br />
preserved for a number of reas<strong>on</strong>s : to check the results, for future<br />
diagnostic needs, including those of the family, and for research<br />
purposes. Both the individual and the family may benefit if<br />
samples are kept in case a genetic defect could be identified at<br />
a later date. Testing of samples as a research procedure may<br />
help to improve our understanding of genetic variati<strong>on</strong> and the<br />
prevalence of other genetic diseases in the populati<strong>on</strong>.<br />
Authorisati<strong>on</strong> for such uses should have been obtained when<br />
initial c<strong>on</strong>sent for <str<strong>on</strong>g>screening</str<strong>on</strong>g> was given, even when the samples<br />
are to be used an<strong>on</strong>ymously, and special care is needed to ensure<br />
the c<strong>on</strong>fidentiality and security of stored samples.<br />
Disclosure to family members<br />
5.5 Our main c<strong>on</strong>cern, however, is not with disclosure to the<br />
individual, but where the interests of others are c<strong>on</strong>cerned. This<br />
raises some of the most serious <str<strong>on</strong>g>issues</str<strong>on</strong>g> in this report. The<br />
perceived interests of members of the same family sometimes<br />
clash. Such clashes can usually be resolved in careful discussi<strong>on</strong><br />
with experienced professi<strong>on</strong>als. But we need to c<strong>on</strong>sider the<br />
problems that unhappily do not reach such a resoluti<strong>on</strong>. These<br />
problems are much more acute for X-linked and autosomal<br />
dominant diseases, as illustrated by the example in Fig E.<br />
Fig E<br />
A man diagnosed with a mild form of<br />
adrenoleukodystrophy (ALD), an X-linked c<strong>on</strong>diti<strong>on</strong> that<br />
can be carried by healthy females, did not wish his<br />
diagnosis or the genetic implicati<strong>on</strong>s to be discussed<br />
with his family. Seven years later, his niece gave birth<br />
to two successive boys who have a more severe form of<br />
ALD. The illness <strong>on</strong>ly came to light in them when the<br />
elder boy started to display symptoms. The mother’s<br />
sister, the man’s other niece, has also given birth to a<br />
s<strong>on</strong> subsequently diagnosed with ALD. Both families are<br />
bitterly resentful that the medical services did not warn<br />
them of their genetic risk.