Human Tissue (Authorisation) (Scotland) Bill: EIA

The Scope of the EQIA

This assessment focuses on the impacts of the specific changes to authorisation, rather than the potential impacts on transplant recipients.

The likely impacts of the legislation were assessed by identifying existing evidence, analysing potential impacts and testing these with analytical and wider policy colleagues. They were also considered through the public consultation and through further engagement with specific groups which would be affected by the proposals. This included focus groups facilitated by the Scottish Health Council with young people, young people with experience of being looked after, and people with learning difficulties to understand what they thought about particular elements of the proposals and what should be taken into consideration as they are developed. Issues were also explored with representatives of several faith groups which responded to the consultation.

Discussions about the impacts were also held with a sub group of the Scottish Donation and Transplant Group which has been considering the proposals for a soft opt out system more broadly. In addition, discussions have been held with those in the field of donation and transplantation with particular responsibility for increasing donation from ethnic minority communities.

The consultation on increasing organ and tissue donation, which included proposals for a soft opt out system, asked respondents about particular impacts or implications of the proposed changes on equalities groups. Just over half of organisations (55%) and around a fifth of individuals (18%) said they could identify impacts or implications for particular equalities groups.

Religion was the focus of most comments about negative impacts for equalities groups. Respondents stressed the importance of promoting the right to opt out, and working with faith groups to ensure this message was effectively communicated. Those who offered more detailed comments identified three main issues: that some people may be opposed in principle to donation for religious or cultural reasons; that religious or cultural requirements relating to the handling and burial of the deceased may need to be considered; and that the issue of explicit consent was crucial for some who believed in the sanctity of the human body and human autonomy. Respondents argued that an opt out system would be incompatible with the beliefs of such groups or would risk donations being deemed in situations where an individual was opposed for religious or cultural reasons.

Other protected characteristics highlighted in the responses included those with disabilities, or long term or life-limiting conditions. There were concerns that this group would be vulnerable if an opt out system led to a culture in which the healthcare system or individual clinicians prioritised the retrieval of organs over treatment. Additionally respondents identified those with mental incapacity, cognitive impairment or mental ill health. Respondents were concerned that those unable to properly understand the implications of an opt out system – either on a temporary or long term basis – would be less able to express their wishes regarding organ donation.

Hard to reach or socially disadvantaged groups which included some protected characteristics were also identified such as young people, older people and recent migrants. Additionally, some respondents queried whether there would be implications for LGBT people.

More broadly, respondents highlighted the importance of consulting equalities groups, the need for public information to take account of specific needs, and for those involved in donation to take account of the needs or views of different equality groups.