Whose Decision is it? Organ Donation Attitudes Among Young UK South Asians

Abstract

A questionnaire study examined organ donor card holding rates and attitudes to organ donation among young adult British South Asians and Whites attending institutions of higher education in the UK. There were 382 respondents (166 male, 216 female, average age 21.8 years): 107 Indian (Hindu or Sikh), 104 Pakistani/Bangladeshi (Muslim) and 171 White (Christian or of no religion). Overall, 33% of White but only 9% of South Asian respondents had a donor card. Among Whites, only 6% thought their parents would find it emotionally very upsetting to discuss organ donation, and of the White card holders 70% had told their parents that they had a card. In contrast 18% of Indians and 52% of Pakistanis/Bangladeshis thought that their parents would find it emotionally very upsetting to discuss organ donation, and only 39% of South Asian card holders had told their parents that they had a card. Finally, 41% of White, 54% of Indian and 91% of Pakistanis/ Bangladeshi respondents doubted that they would take steps to obtain an organ donor card. White respondents proffered inertia as the main explanation for their not being likely to get a card. The factors underlying South Asian respondents not planning to obtain a card were more varied and included disinterest, emotional distaste, family opposition and religion. These reasons can be interpreted as relating to an interdependent conception of self and donor decisions being a family as well as an individual matter.

Should the family have a role in deceased organ donation decision-making? A systematic review of public knowledge and attitudes towards organ procurement policies in Europe

“…It means that relatives may either authorise the retrieval of organs despite the deceased's explicit refusal, or oppose the retrieval of organs against the deceased's explicit consent (also called "family veto"). Thirteen studies addressed this question (24,25,27,29,42,43,45,49,50,(52)(53)(54)(55). Five addressed it in general terms, eight addressed the specific question of the family's capacity to veto the deceased's consent, and none addressed the specific question of the family's capacity to authorise organ retrieval despite the deceased's refusal.…”

The flow of soul: a sociological study of generosity in England and Wales (2001–2011)

“…We are currently investigating the latter issue using other datasets. It might also be the case that some groups were exaggerating their charitable donations, as has been found in organ donations (Joshi, 2011). Again we do not have administrative records from charities to check.…”

Organ donation and transplant: The Islamic perspective

“…The somewhat divided opinions of scholars appear to be reflected in the considerable confusion which exists within the Muslim community about organ donation. Studies have shown that many Muslims think living and deceased organ donation are not allowed in Islam, which can negatively influence their attitudes toward organ donation and transplantation . Other studies found that lack of public knowledge and understanding of the Islamic rulings on organ donation and transplantation is the major culprit .…”

“…It is a difficult subject to breach due to religious sensitivities, and many believe that it is not important enough . Compared to non‐Muslim Caucasians and Indians, Muslims from Pakistan and Bangladesh were more likely to indicate that their parents would find it upsetting to discuss their accidental death or even the issue of signing a donor card . How family relations may be affected as a result of living donation or lack thereof was an important consideration for participants in a Pakistani study, many of whom believe that donation could lead to potential conflicts between relatives …”

“…However, others prioritized the family's wishes, citing the norms of family relationships in Pakistan to justify their opinions and also stating how in Islam, the family has authority to make such decisions . Pakistani and Bangladeshi Muslims living in the UK are also more tolerant of parents overruling the organ donation wishes of their offspring in comparison to Indian or Caucasian non‐Muslims …”