The UK government announced new plans to change the law for organ and tissue donation to address the urgent need for organs within Indian-origin communities in the country. The proposed new system of consent for organ and tissue donation is expected to come into effect in England in 2020 as part of a drive to help black, Asian and minority ethnic (BAME) people desperately waiting for a life-saving transplant.
Under the new presumed consent system, those who do not want to donate their organs will be able to record their decision on the state-funded National Health Service (NHS) Organ Donor Register (ODR). “Organ donation is, of course, a deeply personal choice, and for many, their faith will play an important factor in their decision,” said Jackie Doyle-Price, UK’s Parliamentary Under Secretary of State for Mental Health and Inequalities.
“We want to make it much easier for people to record and share their decision with friends, families and to NHS staff so that they can be confident their wishes – whether or not they choose to donate – will always be respected,” she said.
The announcement comes as a recent report called on the NHS to take more proactive action to address the high death rate among Indian-origin people in Britain due to low levels of organ donation within the community. The ‘Organ Donation: Breaking Taboos Amongst British BAME Communities’ report, commissioned by the Winston Churchill Memorial Trust, was aimed at studying the low levels of donation among BAME communities in the UK.
These communities are seen as generally less inclined to opt for organ donation, largely due to deeply-entrenched cultural and religious beliefs discouraging organ donation. “The government’s latest initiative is well-intentioned but subsequently its success will depend on the degree and efficacy of engagement with the BAME populations,” says report author Nishtha Chugh.
“Death is a sensitive and highly emotive issue in South Asian cultures. And that’s just one of the barriers to organ donation.
“Unless the new programme sufficiently addresses these core issues surrounding beliefs and specific cultures, unless it aims at normalising and encouraging prior family conversations about organ donation in Indian or Pakistani families, the new programme will not succeed in producing the desired numbers the government so desperately wants to see in these ethnic minorities,” added Chugh, a 2016 Churchill Fellow.
As part of her research, she uncovered evidence from a number of countries, including India, to show that it is possible to counter religious and cultural beliefs around organ donation. India has seen a 10-fold increase in its organ donation consent rates over the last decade as a result of sustained public awareness programmes, policy initiatives, and multi-stakeholder collaboration, the findings reveal.
“The NHS strategy to engage with BAME communities on organ donation is woefully inadequate. The focus has always been on awareness rather than behaviour change,” Chugh said.
“A substantial number of patients on the transplant list, and dying as a result of long waiting periods, are Indians and Pakistanis. Each person on dialysis costs the NHS more than 33,000 pounds a year. We can not only save on costs but also save lives,” Chugh added.
According to NHS records, only 7 per cent of donors last year were from BAME backgrounds, with Indians accounting for just 1.9 per cent of the NHS ODR. It found that 21 per cent of people who died on the organ donation waiting list in the UK last year were from a BAME background, compared with 15 per cent a decade ago. Family refusal continues to be the biggest obstacle to organ donation among the UK’s Asian communities, the NHS noted.
Chugh’s research, which covered the US, Qatar and Israel besides India, found that ethnic minority communities in these countries have made significant gains in addressing their deeply ingrained taboos surrounding death rituals, increasing awareness about organ donation, and in most cases, consent rates. Sustained public education campaigns and youth engagement are responsible for a higher number of registrations and consent rates in these countries.
“The UK needs to think beyond opt-out. It’s not a magic pill; and will not solve the core issues surrounding BAME consent rates,” Chugh said.
Both India and the UK follow the opt-in system, whereby families’ decision to donate organs of their loved one after death is discretionary. The UK government is now moving towards adopting legislation favouring the opt-out system to address the growing crisis in the country.
“Incentive does not need to be a dirty word. Incentivising organ donation can correct the imbalance between takers and givers in a society, where a few weeks or months longer on the waiting list for organs can mean the difference between life and death,” the report notes.
As a multi-ethnic country with complex social and cultural structures, India can offer a number of valuable lessons to the UK on how to address deeply-entrenched beliefs discouraging organ donation in the South Asian diaspora, the author argues.