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Presumed/ Deemed Consent in Organ Donation

بِسۡمِ اللهِ الرَّحۡمٰنِ الرَّحِيۡمِ

The global demand for organ donation surpasses the available supply for transplantation, presenting a widespread challenge. Within the UK, this issue is particularly acute within the Asian community, constituting approximately 5% of the population. Despite their relatively smaller demographic representation, Asians are disproportionately represented on organ transplantation waiting lists, comprising 17%, while constituting only 4% of all deceased organ donors and 13% of recipients. These statistics underscore the urgent need for increased organ donation among Asians, a significant proportion of whom are Muslims.

Implementing the Organ Donation (Deemed Consent) Act in 2020 in England marked the introduction of a new opt-out organ donation law in the UK, following similar legislation in Wales in 2015  and Scotland in 2021. This legislation presumes that all adults over 18 years of age have consented to organ donation upon death unless they have explicitly opted out or are part of excluded groups. While this opt-out system aims to bolster organ donation rates, its efficacy remains debated among researchers and commentators.


Optin Optout

Consent is a legal requirement for the removal of organs or tissues under the Human Tissue Act 2004 (HTA). A fundamental tenet of the Organ Donation (Deemed Consent) law is the absence of required expressed consent. Advocates of this legislative change cite government statistics indicating that approximately 80% of the UK populace supports organ donation, positing that the new law aligns legal frameworks with public sentiment. However, the validity of this statistic is subject to scrutiny, as it may not reflect nuanced attitudes toward deemed consent for organ donation. Notably, while general support for organ donation is widespread, acceptance of presumed consent varies among demographic groups. For instance, a 2019 survey conducted by Agroni Research Ltd on behalf of NHS BT found that only 31% of surveyed adult Muslims expressed support for organ donation.

Ethical considerations arise regarding the presumption of consent for organ donation, particularly among ethnic minority groups such as the UK Muslim community. The ethical implications of presumptive consent without evidence to support its applicability within specific sub-groups are questioned. Moreover, concerns regarding autonomy and informed decision-making underscore the need for transparent communication and respect for individual preferences.

While the Organ Donation (Deemed Consent) law stipulates mechanisms for consultation with the deceased's family or designated representatives, concerns persist regarding the potential infringement on individual rights and religious beliefs. Within the Muslim community, debates centre on whether brainstem death aligns with Islamic notions of death and the permissibility of organ donation under such circumstances. Despite efforts to promote organ donation among Muslims, discrepancies persist regarding interpretations of Islamic law and ethical considerations surrounding deceased organ donation.

The UK General Medical Council’s guidelines on consent state that there should be an exchange of relevant information specific to the individual patient and that all patients have the right to be given the information they need to make a decision and the time and support they need to understand it.
To “presume” by default that we (doctors) have “consent” to remove organs from a deceased person because there is no prior statement from him/ her against such an action cannot be said to meet the universal criteria for a valid consent as understood by the medical profession nor the Human Tissue Act's (2004) own definition of a valid consent (page 48). Presumed consent is not actual informed consent. Furthermore, removing organs from someone who has not given expressed consent is more akin to taking organs rather than donating organs.

Addressing these complex ethical dilemmas requires careful consideration of cultural, religious, and legal frameworks, alongside transparent communication and community engagement. Ultimately, fostering trust and understanding between healthcare professionals, policymakers, and diverse communities is essential for navigating the ethical complexities of organ donation and transplantation.

Useful links:
The New Opt-out Organ Donation Law FAQs
Is Brain death Actual Death?


Dr. A. Hussain, Sep. 2021