The Human Tissue (Authorisation) (Scotland) Bill provides for a soft opt out system of organ and tissue donation for adults (aged 16 and over) and makes some changes to the process for authorising donation by children. A full CRWIA was carried out to assess the impact of the Bill on children and young people.
The Bill has been developed in line with UNCRC principles of advancing children’s rights and aligning the approach where appropriate with that taken for adults. The provisions in the Bill provide a balance between safeguarding and enabling children and young people’s rights. There are various new provisions which will affect children and young people under 16, including:
• Enabling a child aged 12 to 16 to make an opt out declaration which will have legal effect.
• A duty to inquire about a child’s most recent view on donation, including whether they would have been willing to donate in the specific circumstances of death.
• Requirement for those authorising on behalf of a child to take into account knowledge of unwillingness of the child to donate (new for under 12s).
• Enabling a local authority to authorise donation for a child for whom it holds parental rights and responsibilities (PRRs).
• Enabling an adult with a close relationship with a child to authorise donation for a child for whom there is nobody with PRRs or they have lost capacity to take a decision on donation.
There are various new provisions which will affect children and young people aged 16 to 18, including:
• Enabling an adult to make an opt out declaration which will have legal effect.
• Introduction of deemed authorisation, where an adult has not recorded a donation decision.
• Protections for those without the capacity to understand deemed authorisation or those resident in Scotland less than 12 months, who would require explicit authorisation.
• A duty to inquire about the adult’s most recent view on donation, including whether they would have been willing to donate in the specific circumstances of death.
• Requirement for those authorising on behalf of an adult to take into account knowledge of unwillingness of the adult to donate.
One of the Bill’s overarching principles is to give precedence to the views of the potential donor, which will mean in all circumstances and for people of all ages it should be the views of the potential donor which determine whether donation goes ahead, where they are known.
Focus groups with young people and young people with experience of being looked after were undertaken to understand what they thought about particular elements of the proposals and what should be taken into consideration as they are developed.
On-going awareness raising work regarding donation and also future awareness raising specifically regarding the opt out system will be important in explaining what choices people have, and supporting children and young people to make informed decisions about donation.