Consent for Research

It is a sensitive subject to raise with newly bereaved parents asking them to consent to either additional samples being taken or samples available after their child’s post-mortem examination and the investigation into the case of their death has concluded, which may be made available in the future for research into the causes of unexplained baby and child death.

Many parents when asked in a sensitive manner agree that they would like to help research to prevent future deaths and to perhaps one day find out the cause(s) of unexplained infant deaths. Whilst the exact cause of their own child’s death may not be discovered they will help future families such as their own. In this regard many families want to help.

It is a deeply personal choice and no family should feel pressured into making a decision they do not feel able to make. It should be discussed however, as there is a limited time when families can consent for this. Once the opportunity has passed families cannot then decide later on. Unless consent has been given the samples taken at post-mortem examination are only  used to diagnose the cause of that baby’s death not to inform future research.

When asked about research years later, some parents can be angry that they were not asked to consent at the time their child died.  Helping others can provide comfort to families. Professionals such as the Procurator Fiscal or Paediatric Pathologist may ask but families can raise the issue too if they wish.