Why England’s new opt-out won’t help BAME communities

By Aileen Editha.

In May 2020, an opt-out framework for deceased organ donations came into force in England. This means that, unless an adult individual has opted out, her organs could be donated after her death. This is otherwise known as ‘deemed consent’.

This was enacted as an effort to solve the prominent organ scarcity or organ shortage issue. The reform was expected to provide an additional 200 transplants annually for England alone. However, a major issue likely to be left unaddressed is the persistently low organ donation rates from Black, Asian, and Minority Ethnic (BAME) communities, which will be our main subject of discussion.

In 2019/20, deceased transplants have decreased by 2% in England and Wales compared to the previous year. A total of 377 patients (359 adults and 18 children) died waiting for a transplant. Notwithstanding the impact of the COVID-19 pandemic, organ donation rates have been persistently low. In the previous year, only 3,941 transplants were successfully performed out of the 9,399 patients on the transplant list. Organ scarcity is much worse for the BAME demographic as 17% more of BAME patients—compared to white patients—are more likely to still be waiting for a transplant after one year. As ethnicity plays a key role in tissue and blood group matching, a greater shortage of BAME donors means a longer queue for BAME patients.

Although we are yet to see the promised impact of England’s opt-out, we have been able to see how the framework has been received by BAME communities. In less than a year since the legislation came into force, there have been widespread objections. 74.3% of the current opt-outs are from BAME communities. 51% of which are of Asian ethnicity, in particular those of Indian, Pakistani, and Bangladeshi descent. This indicates that, contrary to what has been suggested, an opt-out system alone will not be able to increase BAME donation rates.

The high opt-out figures from BAME communities indicates the system’s failure to sufficiently take into account other equally-important factors which may hinder donations. Religious or cultural objections, for instance, are prevalent among BAME communities and have considerable influence over one’s decisions. However, some of these objections are questionable. This is why more should be done to raise awareness of how various cultures and religions are, in fact, compatible with deceased donations.

The NHS has successfully increased BAME deceased donation rates by 67% in the last five years, mainly through collaboration with organisations such as the National BAME Transplant Alliance (NBTA). Though the largest growth was seen in Black communities, recent figures suggest that more attention needs to be paid to Asian communities. The 2019/20 family consent rates, i.e. when the family consent to having the deceased’s organs donated, are much lower in BAME families (42%) than in white families (71%). In particular, families from Asian backgrounds are less likely to consent. To address this, the NHS plans to encourage Specialist Nurses to consult the deceased’s families and make specific arrangements to ensure proper respect for various faiths and cultures. Its outcome, however, is yet to be unveiled.

In the meantime, more attention should be paid to projects such as the BAME Community Investment Scheme which financially supports community-led BAME cultural or faith-focussed organisations whose events and campaigns encourage BAMEs to donate. The scheme has successfully softened opposition to organ donation. Although £136,463 was invested into the scheme, this sum is relatively small compared to the £2m spent for England’s transition to the opt-out.

The NHS’s increased efforts to give greater regard to BAME communities should be welcomed. However, vigilance is required to discern where there are gaps in the legal and regulatory framework. More importantly, we must take note of who escapes through these gaps and how we might ensure that they are not forgotten and left behind. As recent figures suggest that more must be done to encourage deceased donations from Asian communities, the NHS should consider increasing investment in community-led schemes which have proved to be successful in the past.

 

Author: Aileen Editha

Affiliations: Durham Law School, Durham University, Durham, United Kingdom.

Social media accounts: @aileenedithap

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