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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cauti<strong>on</strong> is needed when any wider <str<strong>on</strong>g>screening</str<strong>on</strong>g> of children for later<br />
<strong>on</strong>set genetic disorders is to be c<strong>on</strong>sidered.<br />
Mentally-ill and those with severe learning difficulties<br />
4.26 So far as genetic testing of the mentally ill is c<strong>on</strong>cerned, the legal<br />
positi<strong>on</strong> has been held by some to be governed by the House of<br />
Lords decisi<strong>on</strong> in F v West Berkshire Health Authority 12 , a case<br />
which c<strong>on</strong>cerned the sterilisati<strong>on</strong> of a 36-year old woman. If<br />
strictly followed, it is not clear that genetic testing could ever be<br />
properly c<strong>on</strong>ducted <strong>on</strong> some<strong>on</strong>e who is mentally disabled when<br />
the purpose of the test is to benefit a family member or some<strong>on</strong>e<br />
other than the pers<strong>on</strong> being tested. It is a matter for c<strong>on</strong>siderati<strong>on</strong><br />
whether genetic tests <strong>on</strong> mentally ill individuals or those with<br />
severe learning difficulties should be permitted in situati<strong>on</strong>s where<br />
the informati<strong>on</strong> gained would be of clear benefit to other family<br />
members. For example, should men with severe learning<br />
difficulties be tested for the gene for fragile X syndrome in order<br />
to find out whether sisters or nieces might be carriers, and<br />
therefore at risk of having boys with the disorder? The benefit to<br />
the family could be great and the risk of harm to the individual<br />
being tested negligible.<br />
Other vulnerable individuals<br />
4.27 Special care is always needed when c<strong>on</strong>sent is being sought from<br />
vulnerable individuals, such as pris<strong>on</strong>ers, student volunteers, and<br />
(as noted in paragraph 4.21) from individuals who do not speak<br />
English.