A large-scale organ donation programme in the UAE will benefit from greater public education and awareness, a study shows.
Concern that donating an organ goes against religious beliefs was among the factors that may put people off signing up.
Fears over the body being cut open after death and unfounded concerns that doctors might withhold treatment from potential donors were also identified in the study.
Researchers at the Higher Colleges of Technology, the UAE's largest university, and Lancaster University in the UK published their results in the BMC Public Health journal.
Their findings could help to inform future awareness campaigns and overcome hurdles to getting more people to volunteer.
“Fear was a major factor in deciding whether a person would sign up for the deceased organ donation programme,” the study's authors wrote.
The research involved in-depth interviews with 17 UAE residents of various nationalities and religions.
They were asked about their views on transplants and what would influence whether they signed up as a potential donor.
One set of concerns centred on "body integrity", which includes a fear of being cut open.
“I do not want my body to be cut open and [for doctors to] take stuff from me after my death. Skin, heart, bones, everything, everything, they are mine,” one participant, a 22-year-old man, said in an interview for the study.
With research also carried out in countries including South Africa, the UK and the US, some participants were concerned that if they registered as potential donors, doctors may not do everything to save their lives in the event they needed treatment.
“They feared that interventions might be withheld so that patients would become eligible for the deceased organ donation programme,” the researchers wrote.
“Another source of worry was that their organs would be harvested unethically or before they died to be given to specific high-profile people.”
Parental permission and religious misunderstanding
Organ transplants are relatively new in the UAE, the researchers said. The first kidney transplant on an Emirati patient took place 11 years ago.
It is only eight years since the first transplant using an organ from a dead person was performed in the UAE, the researchers said.
Since the deceased organ donation programme was set up in 2016, the study showed, donated organs went to 22 recipients.
The researchers reported that some of the people interviewed were worried their parents would disapprove if they became organ donors, even though family permission is not required to register.
“In certain societies, such as the one in the UAE or the Middle East, parents hold the utmost power within the family. Therefore, the rest of family members have to follow, even if this involves donating one’s organs as a good deed,” the researchers said.
“In fact, some mothers strongly advocated that they should be the ones to make the decision about donating their child’s organs.”
The identify of the organ recipient, such as their religious affiliation or whether they were a family member, also influenced the views of some respondents.
"I would probably do it if it went to Hindus only," a 56-year-old woman told researchers.
Respondents were also concerned about what their own religion said about organ donation, although some were uncertain what the view of their particular faith was.
There was a conflict between the desire to be altruistic – something that numerous religions advocate – and the importance of maintaining the body’s integrity.
Highly respected Muslim scholars fully approve of organ donation, from deceased and living donors.
Saudi Arabia's organ programme, in operation since 1986, is highly regarded and about 12.5 per cent of Saudis are donor cardholders.
Having experience of transplantation, such as knowing someone who had received a donated organ, meant a person was more positive about signing up as a potential donor.
In response to the study, Dr Ali Al Obaidli, head of the government's Organ Donation and Transplant Committee, said that over time the public would learn of more lives being saved.
That would lead more people to volunteer to be donors themselves, he said.
"Our journey in the UAE is relatively new, so we have not faced families specifically requesting that the organs go to a specific nationality or religion," he said.
"What they want to hear is that the organs will go to multiple nationalities – and that makes them feel better.
"The most important factor is how easy it is for the public to donate. The more people who want to donate, the less these fears [affect them]."
A recent UAE government survey showed that 68 per cent of respondents were willing to donate their organs after their death, which he said was encouraging.
Role of faith leaders
Regarding concerns linked to religion, it was important to involve faith leaders as part of the conversation "so that communities can make their own informed decision", said Gurch Randhawa, professor of diversity in public health at the University of Bedfordshire in the UK.
“It’s about saying, ‘Let’s have this faith-based or community-based conversation', rather than, in a sense, telling people what to do,” said Prof Randhawa, who wrote the Faith Engagement and Organ Donation Action Plan for the blood and transplant division of the UK National Health Service.
“It’s more about how to normalise conversations about both deceased and living donation. It’s a challenge lots of countries have.
“What people need are safe conversations about organ donation. Not just [about] religion, but brain death, cardiac death.”
Prof Randhawa said the media could help by highlighting cases where families made the decision to donate organs, because such cases normalised organ donation.
A focus only on organ recipients could make people think that, if they were ever in need of a transplant, an organ would be available.