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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5.22 Do additi<strong>on</strong>al measures need to be taken to deal specifically with<br />
the unauthorised disclosure of genetic informati<strong>on</strong> by health<br />
service employees? Does genetic informati<strong>on</strong> raise any questi<strong>on</strong>s<br />
of c<strong>on</strong>fidentiality which are radically different from those which<br />
apply to other sensitive pers<strong>on</strong>al medical informati<strong>on</strong>? Why<br />
should the c<strong>on</strong>fidentiality of genetic informati<strong>on</strong> be singled out for<br />
special treatment bey<strong>on</strong>d that accorded to other medical<br />
informati<strong>on</strong> about individual patients? We appreciate that there<br />
are c<strong>on</strong>cerns about c<strong>on</strong>fidentiality generally, recently expressed for<br />
example in the Report of a Working Group <strong>on</strong> the Access to<br />
Named Data by Management and Administrati<strong>on</strong> under the<br />
chairmanship of Professor Roy Weir in 1991. 5 In our view the<br />
c<strong>on</strong>fidentiality of genetic informati<strong>on</strong> is best seen as an aspect of<br />
the problem of c<strong>on</strong>fidentiality generally. Nevertheless it is a<br />
serious issue in the c<strong>on</strong>text of genetic <str<strong>on</strong>g>screening</str<strong>on</strong>g> and, before<br />
programmes are set up, the mechanisms for ensuring<br />
c<strong>on</strong>fidentiality should be defined and secured.<br />
The disclosure of genetic informati<strong>on</strong><br />
5.23 Thus the c<strong>on</strong>fidentiality of genetic informati<strong>on</strong> is protected in a<br />
number of ways, involving the comm<strong>on</strong> law, statute, professi<strong>on</strong>al<br />
codes of practice and c<strong>on</strong>tracts of employment. But the duty of<br />
c<strong>on</strong>fidentiality is not absolute. At comm<strong>on</strong> law c<strong>on</strong>fidential<br />
informati<strong>on</strong> may be disclosed where it is in the public interest to<br />
do so (paragraph 5.16). Under the Data Protecti<strong>on</strong> Act 1984,<br />
protected informati<strong>on</strong> may be disclosed where it is urgently<br />
required for preventing injury or damage to the health of any<br />
pers<strong>on</strong> or pers<strong>on</strong>s (paragraph 5.18). And under the General<br />
Medical <str<strong>on</strong>g>Council</str<strong>on</strong>g>’s Guidance to doctors c<strong>on</strong>fidentiality may be<br />
overridden in the public interest (paragraph 5.20).<br />
The <str<strong>on</strong>g>ethical</str<strong>on</strong>g> dilemmas<br />
5.24 We discuss first the resp<strong>on</strong>sibility of the individual in resolving the<br />
dilemmas and next the role and resp<strong>on</strong>sibility of the doctor or<br />
other professi<strong>on</strong>al adviser. The main <str<strong>on</strong>g>ethical</str<strong>on</strong>g> dilemma arises from<br />
a c<strong>on</strong>flict between the right of the individual to pers<strong>on</strong>al privacy <strong>on</strong><br />
the <strong>on</strong>e hand and the interest of family members to be made fully<br />
aware of available informati<strong>on</strong> which would play a part in making<br />
important life decisi<strong>on</strong>s <strong>on</strong> the other. A balance needs to be<br />
struck between the two. A further complicating factor is that some<br />
family members may not wish to be presented with the