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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5.19 It is a criminal offence for a data user knowingly or recklessly to<br />
disclose informati<strong>on</strong> to a third party. The aggrieved individual<br />
could also refer the matter to the Data Protecti<strong>on</strong> Registrar who is<br />
empowered to issue an enforcement notice to the data user<br />
directing him or her to comply with the data protecti<strong>on</strong> principles.<br />
The Registrar may ultimately issue a de-registrati<strong>on</strong> notice to a<br />
data user who violates the data protecti<strong>on</strong> principles. There is no<br />
provisi<strong>on</strong> in the Act for compensating a data subject who is a<br />
victim of the unauthorised disclosure of informati<strong>on</strong> by the data<br />
user. There may, however, be a right to damages for any loss<br />
suffered, arising under the general law of tort. A data subject is,<br />
in c<strong>on</strong>trast, expressly entitled to compensati<strong>on</strong> for damage or<br />
distress caused by the disclosure of the data without the authority<br />
of the data user.<br />
47<br />
Professi<strong>on</strong>al codes of c<strong>on</strong>duct<br />
5.20 Apart from the comm<strong>on</strong> law and statute, the c<strong>on</strong>fidentiality of<br />
medical records in general and genetic informati<strong>on</strong> in particular is<br />
protected by professi<strong>on</strong>al rules of c<strong>on</strong>duct governing at least some<br />
health professi<strong>on</strong>als. The General Medical <str<strong>on</strong>g>Council</str<strong>on</strong>g>’s guidance<br />
states that:<br />
“Patients are entitled to expect that the informati<strong>on</strong> about<br />
themselves or others which a doctor learns during the<br />
course of a medical c<strong>on</strong>sultati<strong>on</strong>, investigati<strong>on</strong> or treatment,<br />
will remain c<strong>on</strong>fidential.”<br />
The General Medical <str<strong>on</strong>g>Council</str<strong>on</strong>g>’s guidance also states, however, that<br />
a doctor’s duty of c<strong>on</strong>fidentiality is not absolute and may be<br />
overridden in the public interest. This appears to reflect (but may<br />
not be identical with) the legal obligati<strong>on</strong>s already c<strong>on</strong>sidered.<br />
5.21 C<strong>on</strong>cern has been expressed that professi<strong>on</strong>al obligati<strong>on</strong>s of this<br />
nature do not govern every<strong>on</strong>e employed in the health service who<br />
may come into c<strong>on</strong>tact with c<strong>on</strong>fidential genetic informati<strong>on</strong>. This<br />
c<strong>on</strong>cern is misplaced. There are professi<strong>on</strong>al codes, similar to<br />
those laid down for doctors, for disciplines such as nursing, from<br />
whom the majority of genetic counsellors are drawn. Other health<br />
service staff are likely to be employed under a c<strong>on</strong>tract of service<br />
which either expressly or by implicati<strong>on</strong> prohibits the disclosure to<br />
unauthorised pers<strong>on</strong>s of c<strong>on</strong>fidential medical (including genetic)<br />
informati<strong>on</strong>. Breach of any such c<strong>on</strong>diti<strong>on</strong> could lead to the<br />
dismissal of the employee resp<strong>on</strong>sible.