Consent and Participant Information Guidance

Principles of consent: Deceased people

Consent given prior to death, is believed to extend beyond death.

However, relatives may have a different opinion, once their relative has died. This should be handled sensitively with relatives being encouraged to respect the deceased person's wishes (or in certain cases, their nominated representative / nominee, see below).

In legal terms, the General Data Protection Regulation (GDPR) and the Data Protection Act no longer applies to identifiable data that relate to a person once they have died.

However any duty of confidence established prior to death does extend beyond death. It is important to maintain confidentiality to ensure that trust in services and institutions are not undermined. Disclosure of confidential information post mortem therefore requires consent to extend the duty of confidence.

If you intend to collect tissue from a deceased person, to use tissue removed from the deceased or to conduct a post mortem purely for research purposes consent is required across the UK.

Tissue removed as part of a Coroner's / Procurator Fiscal's post mortem can be used for research, once they are no longer required for such legal purposes, however consent for use in research must be in place.

Although legal details may vary between the nations within the UK, the same basic legal and ethical principles apply in terms of the consent required:

  • The person themselves can give consent for their tissues to be used for research prior to their death. If the person was not able to consent for themselves prior to death (due to lack of capacity), someone else may have been asked to provide consent, assent or advice on their behalf (visit 'Principles > Adults who are not able to consent for themselves').
  • Consent given before death should be respected, even when relatives may initially disagree.
  • If consent is not in place, and the person has not specifically refused prior to their death:
    • In England, Wales and Northern Ireland an adult can nominate someone to represent them after their death and to give consent on their behalf. The nominated representative's consent cannot be overridden by other individuals, including those in a qualifying relationship.
    • In Scotland a person can be nominated by anyone (aged 12 or over) before their death, to represent them after death. A nominee can then give authorisation (equivalent to consent) on behalf of the deceased person.
  • If consent has not been sought from the above, the following can provide legally appropriate consent (or 'authorisation' in Scotland) on behalf of the deceased person:
    • In England, Wales and Northern Ireland, those in a qualifying relationship.
    • In Scotland, nearest relative.

For further guidance visit the HTA consent code of practice.