Opt out organ donation: a rapid evidence review

5. Opt out – ethnicity and religion

5.1: Rationale and context

This section aims to provide a summary of the evidence on the potential impact that opt out could have on specific ethnic and religious groups. A wider search was undertaken for a range of protected characteristics ( e.g. disability, age). This was to assess any potential uneven impacts of opt out on particular groups and to support potential mitigation strategies. Ethnicity was selected for this summary as there is a greater need for organs (particularly kidney) from certain minority ethnic groups as the best match for a kidney is from someone within the same ethnic group. Waiting times for kidneys in particular are normally longer for people from minority ethnic groups, who have a higher risk renal failure. For example, the average wait for a White patient is approximately two years for a kidney, whereas for Asian and Black patients it is over three years ( NHS Blood and Transplant , 2017). This is thought to be driven partly by greater demand due to a predisposition to several health conditions that result in kidney failure. It is also driven by supply shortages: in the UK, there is a lower proportion of people from minority ethnic communities on the ODR. In addition, families belonging to minority ethnic groups are less likely to authorise donation and have less positive attitudes regarding organ donation generally (Optimisa Research, 2014).

This is particularly important as in the UK demand for organs from minority ethnic donors has increased by approximately 57% over the last five years, faster than in the general population ( NHS Blood and Transplant 2016, 2016). For Scotland, this may be of growing importance as the minority ethnic population continues to increase. Moreover, organs are shared throughout the UK. For example, an organ from Scotland could be transplanted into someone in Wales. Therefore Scotland could be impacted by the overall supply of organs from minority ethnic donors in the UK, although the number of people from minority ethnic groups waiting for an organ in Scotland is proportionately lower than that in England.

Religion was examined in more depth than other characteristics for several reasons:

• Partly due to its partial interaction with ethnicity
• The evidence base for religion (and ethnicity) is more developed than for other characteristics
• There is clearer evidence regarding a potential impact of religion on organ donation

5.2 Minority ethnic groups

Attitudes of minority ethnic groups towards opt out and organ donation more widely

This section examines evidence with regards to the attitudes of ethnic groups as the literature identifies that some of these groups are likely to hold particularly different attitudes from the general population. It is well established in the UK that minority ethnic groups tend to be less supportive of organ donation generally and have greater concerns about it. At a UK level in 2014, support amongst minority ethnic groups for organ donation is lower than in the general population (44% vs. 86%) and only 28% state that they would consider donating their own organs compared to 82% of the population (Optimisa Research, 2014). No evidence was identified on the attitudes of minority ethnic groups towards opt out and this is an area that requires further research. However, given this lower overall support, it is not unreasonable to assert that there is likely to be less support for opt out overall.

Impact of opt out on minority ethnic groups

We did not identify any direct evidence of the impact of opt out legislation or systems on minority ethnic groups. We recommend continued monitoring of this area of research as it develops. This review therefore examines some of the wider literature analysing the impact of ethnicity on organ donation and attempts to make inferences where possible, which should be considered within these limitations.

Impact on the organ donation registration by minority ethnic communities

There is no specific evidence of the impact of opt out on registration on the organ donor register by people from ethnic minorities. However it is not unreasonable to assert that opt out provides an opportunity for increased targeted awareness raising campaigning, which could be used to target minority ethnic groups, in particular to encourage the registration of their wishes. Conversely the evidence presented on religion presents some potential barriers, which could make minority ethnic groups who hold those religious views more likely to opt out in response to the new systems.

Impact of opt out on the authorisation of potential donors from minority ethnic communities

In Scotland, authorisation rates remain much lower for deceased minority ethnic donors relative to the general population. For instance, after neurological death, authorisation rates were 74% for white patients compared to 35% for minority ethnic patients. A smaller, but still significant, difference was observed for donation after cardiac death ( DCD) authorisation rates: 61% and 31% respectively ( NHS Blood & Transplant 2016). Improving authorisation amongst minority ethnic groups clearly remains an important continuing challenge.

No evidence was found concerning the impact of opt out on authorisation rates for minority ethnic groups. It is possible that it could lead to an increase through deemed authorisation and more positive conversations with medical staff. However, there is also the risk that due to a range of factors (poorer knowledge, less positive attitudes, greater concerns around organ donation), that a move to opt out could result in levels of authorisation remaining similar or decreasing. We recommend that future research is monitored.

5.3 Religion

Attitudes of religious groups towards opt out

There is evidence which suggests that religion is likely to be a key influence on decisions about organ donation, although the impact is likely to vary within and between religious/faith groups.

Evidence was identified that explored the attitudes of religious groups towards opt out. Interviews with UK leaders of the main faith and belief organisations were carried out on behalf of the 2008 Organ Donation Taskforce. They found that the majority of faith leaders supported an opt in system, and preferred retaining it to the opt out system (Randhawa, et al., 2010), which only a few participants supported. Whilst this could provide some indication of potential views of religious populations themselves, it is important to note that these views do not necessarily represent the views of those populations. Indeed, the relationship appears to be complex and varies by religion. Indeed, religion could interact positively with opt out with some religious groups in certain contexts. For instance, the six countries with opt out policies that have the highest number of donors on a register (ranging from 66-94%) are Catholic (Mone, 2017). However, numbers on the register are not necessarily an indicator of an effective opt out system and there was no firm evidence identified that being Catholic firmly impacts individuals decisions regarding donation.

Attitudes of religious groups towards organ donation more widely

This section aims to draw inferences from the wider literature on attitudes to organ donation as a whole. A study of Muslims of Pakistani origin and white English nationals (a spectrum of religious and non-religious groups) living in the North of England carried out in 2003 found differences between Muslim and White English groups in terms of the influence of religious belief on attitudes and views towards organ donation. In particular, for Muslims, there was a strong emphasis on understanding Islam's position when considering decisions about donation. In contrast, concerns relating to religion were not reflected in the views of white English individuals, where issues relating to a lack of trust in the medical profession or a fear that doctors might not try so hard to save their life, were more common concerns (Haward, 2003). Focus groups with a cross section of Black African and Caribbean populations in South London also identified religion as a factor influencing the decision to agree to become an organ donor or not (Davis, 2006). These findings have been replicated more recently in mixed methods research commissioned by NHS Blood and Transplant (Optimisa Research, 2014). Another study by Sharif et al (2011) surveyed Western Muslims (British, European, North American and Oceanic geography) on attitudes to organ donation and found that only 26% of respondents agreed with the concept of presumed consent (or 'opt out'). This compared with 55% who did not, and 20% who did not know (Sharif, et al., 2011).

In both the qualitative and quantitative research, Muslims were much more likely to mention religion as a key influence on any decision about organ donation, and to reflect on whether or not Islam allows or forbids this. In contrast, other faiths were more concerned by issues such as lack of trust or personal concerns (Optimisa Research, 2014). In addition to differences between religious or faith groups, there is often a lack of consensus within these groups on the issue of organ donation (Sharif, et al., 2011). Although the official positions stated by each of the key religious groups in the UK are broadly supportive, and none formally oppose organ donation ( NHS Blood and Transplant 2016, 2016), religion is still often viewed as a barrier (Davis, 2006). Overall, studies have been more likely to identify religious opposition to organ donation (23 studies) than religious support (10 studies) (Oliver & Ahmed, 2011).

Overall the evidence in this section suggests that the views amongst key religious leaders/organisations about opt out seem to be particularly important because of the influence of religion in decisions about organ donation amongst individuals of faith (particularly Islam). It is possible that some people from particular faith groups could take a stance encouraging people to opt out. This suggests a need to continue to work with key opinion leaders ^[12] .