Organ and tissue donation and transplantation: analysis of consultation responses

12. Equality impacts and implications (Q18)

12.1 The final question in the consultation paper focused on equality issues, as follows:

Question 18: Do you think there are particular impacts or implications for any equalities groups from any of the proposals in this consultation, either positive or negative? [Yes / No / Don't know] If yes, please provide details.

12.2 A total of 791 respondents (758 individuals and 33 organisations) answered the tick-box question. Table 12.1 below shows a notably different response pattern for organisations and individuals. Just over half of the organisations who answered the tick-box question said that they could identify impacts or implications for particular equalities groups, compared to around a fifth of individuals. Individuals were more likely to say they could not identify such impacts / implications or that they did not know what the impacts or implications might be - roughly equal proportions of individuals (two in five) selected each of these responses.

Table 12.1: Q18 - Do you think there are particular impacts or implications for any equalities groups from any of the proposals in this consultation, either positive or negative?

12.3 Comments were provided by 159 respondents - 138 individuals and 21 organisations (this included some who answered 'no' or 'don't know' to the tick-box question). In the main, respondents identified negative impacts and implications for one or more groups; some respondents did, however, identify positive impacts and implications. Additionally, it should be noted that the same groups were sometimes highlighted by different respondents in discussing anticipated positive and negative impacts.

Views on an opt out system and perceptions of equality impacts

12.4 The comments made suggested that there were differences in the way respondents answered the question on equality impacts depending on whether or not they supported an opt out system for organ donors. Those opposed to an opt out system were more likely to identify negative equality implications, and their comments suggested that the identified impacts were seen as inherent problems with an opt out system. In contrast, those who supported an opt out system were more likely to identify positive impacts and implications and, where they identified negative impacts, they often stressed that the concerns relating to equality groups should be acknowledged and addressed through appropriate procedures and safeguards rather than seeing them as argument against such a system.

Negative impacts and implications

12.5 Respondents identified a wide range of groups they thought might be adversely affected under an opt out system. This included: (i) groups who may be opposed to the principle of opting out because of their beliefs; (ii) those needing additional protections because of their personal situations; and (iii) those less likely to be aware of an opt out system or less able to exercise their right to opt out.

12.6 Religious groups were the focus of most people's comments. In most cases respondents appeared to be raising this issue from a third party perspective; there were, however, a few respondents - including some faith organisations - who had a direct interest in the issue.

12.7 Most respondents raised general concerns only, noting that an opt out system for organ donation may be problematic for some religious groups. Those who offered more detailed comments identified three main issues: that some people may be opposed in principle to organ donation and / or transplantation 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 or any move towards a presumption in favour of donation would be incompatible with the beliefs of such groups or would risk donations being deemed authorised in situations where an individual was opposed for religious or cultural reasons.

12.8 Although some respondents were opposed to the principle of an opt out system on religious grounds (see also Chapter 3, paragraph 3.11), the most common view was that the right to opt out should meet the concerns raised. Respondents stressed the importance of promoting the right to opt out, and working with faith groups to ensure this message was effectively communicated.

12.9 It was also pointed out that there may be other people who were opposed to organ donation or an opt out system because of their personal moral, ethical or spiritual beliefs who may also be similarly affected by an opt out system.

12.10 One particular concern raised here was the need to respect the views of individual clinicians who may have religious or ethical objections to, or reservations about, an opt out system for organ donation.

12.11 Respondents also noted a range of other groups who, they suggested, needed additional protections because of their personal situations, and / or were less likely to be aware of an opt out system or less able to exercise their right to opt out. Additionally, some respondents argued that people in these already disadvantaged groups were more likely to become organ donors for the benefit of others. The groups highlighted included the following:

• 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.
• Those without immediate or close family: Respondents thought that those without immediate family would be less likely to have anybody who was both aware of their views on organ donation or their personal wishes regarding being a donor and able to represent those views in a situation where an individual was a potential donor and their views were not clear. It was suggested that this may affect those who were not in formal relationships, and those who were not close to - or were estranged from - their family.
• People living in care environments: Respondents thought that those living in care (either as children or adults with special needs) and without immediate family would also have less protection as the 'state' would be less likely to know the views of the individual and less motivated to protect their rights.
• 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.
• Hard to reach and socially disadvantaged groups: Respondents were concerned about a wide range of groups in society who might be less likely to know about or understand an opt out system and the right to opt out, and / or less likely or less able to exercise that right. They were, thus, more likely than other groups to become organ donors against their wishes. Such groups could include: those with sensory or communication impairments; the homeless; prisoners; young people / older people; recent immigrants; those with poor English; those with low reading / literacy skills; and those less likely to have internet access.

12.12 In addition, some queried whether there might be implications (either positive or negative) for LGBT people, and gay men in particular, given the current restrictions on 'men who have sex with men' donating blood. (It should be noted, however, that the deferral criteria covering blood and tissue donation are somewhat different from those for organ donors.)

Positive impacts and implications

12.13 Respondents who identified positive impacts and implications for particular equality groups focused on the following groups:

• Black and minority ethnic ( BAME) groups: Respondents noted that organ donation rates were particularly low among BAME communities for a range of reasons (e.g. religious and cultural beliefs and practices, lower levels of awareness and understanding), while at the same time BAME people were over-represented on transplant waiting lists because of the prevalence of particular health conditions within certain communities. They thought that an opt out system had the potential to increase organ donation rates amongst BAME communities, and / or that an opt out system could increase the number of BAME people receiving transplants.
• People with disabilities / long-term health conditions: Respondents highlighted the fact that the need for a transplant was often linked to a disability or long-term health condition. Any increase in the availability of organs for transplant would, therefore, bring positive benefits for this group.

Views of those who did not think there were any equality impacts or implications

12.14 Those who did not think there were any equality impacts or implications offered three main views: they thought the system - in terms of both risks and benefits - would apply equally to all groups and that the right to opt out protected everyone including those in equality groups; they thought that the proposals outlined in the consultation paper adequately dealt with potential equality issues; or they thought that being a member of an equality group was not relevant to the issue of organ donation.

Other comments

12.15 A small number of other more general points were made with regard to equality implications and impacts. These included the following:

• That it would be important to maintain the confidence of equality groups through ongoing engagement and consultation during the policy development process, and to increase understanding of the views of different groups through further dialogue or research
• That any system would have to respond to potential equality impacts and implications and take account of the special needs of different equality groups (e.g. in the design of publicity and information campaigns; in producing information in different formats and different community languages; in offering simple and accessible ways to opt out)
• That clinicians and those involved in organ donation discussions with families should take account of the needs or views of different equality groups
• That the existence of equality concerns highlighted the more general concerns and risks associated with an opt out system for organ donation
• That any variability in the availability of SNODs or other specialist donation staff could mean that there were regional or service-based differences in the impacts or implications of an opt out system.

12.16 Finally, some respondents took the opportunity to reiterate more general points relating to the perceived risks and problems associated with an opt out system, or the potential benefits such a system might offer.