Consent arrangements: Deceased persons

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The use of anonymous data from deceased persons is lawful, and consent is not legally required from the person before they die or from a nominated representative.

The use of identifiable data from the deceased may have wider implications for those still living. Department of Health policy and GMC guidelines state that confidential identifiable patient information about a deceased person should continue to be treated as confidential. It may be that permission from the person before they die, or a relative should be sought in order to use confidential identifiable information from the deceased. There are many sensitivities around obtaining permission from a recently bereaved person, and the potential to inadvertently divulge sensitive confidential information about the deceased to relatives. A Research Ethics Committee will advise on the appropriate way to handle this for individual projects.  Further guidance is also provided in the 1st resource below.

Ensuring appropriate consent is in place for the research use of tissues from deceased persons that are removed post mortem, is a fundamental requirement of the Human Tissue Act 2004 and the Human Tissue (Scotland) Act 2006.

The consent requirements for the research use of tissues from deceased persons in these two Acts are outlined in the 2nd and 3rd resources below (see also 1st resource). More information is also available from the Human Tissue Authority and Scottish Executive (4th and 5th resources).