Towards deceased organ donation in Asia: negotiating the challenges
As Asia surges forward in attempting to meet the rising demand for replacing failed organs, efforts across the region to develop viable deceased donor programmes are visible. According to reports, these efforts have met with limited success.
Aamir Jafarey, Sanjay Nagral
July 22, 2014, IJME
In the developed world, deceased donation is now a well-established source of organs for the unfortunate sufferers of end-stage disease of vital organs. As the science of transplantation grows and the success of transplantation improves, the rest of the world is keen to offer this life-saving procedure to its citizens. As Asia surges forward in attempting to meet the rising demand for replacing failed organs, efforts across the region to develop viable deceased donor programmes are visible. However, according to reports by contributors to this special theme issue, these efforts have met with limited success. Even where presumed consent has been legislated into law, although the number of potential donors has surged, the actualisation into donations remains dismally low, as pointed out by Jacqueline JL Chin and Theodora H Kwok in their analysis of the Singaporean system (1). In addition to logistical limitations in instituting a deceased donor programme, social, cultural and religious apprehensions regarding deceased donations seem to be a common thread across the continent, and authors have suggested ways and means of addressing these issues. They have pointed out the importance of personal motivation of donors, addressing their misplaced fears, and enacting measures to augment trust in medical professionals.
Several Asian countries including India, Pakistan and the Philippines have struggled hard against the menace of the organ trade and transplant tourism. With sound legislation, especially in the wake of the Declaration of Istanbul (DoI), a significant drop has been recorded in these practices. In the absence of other viable alternatives for replacement organs, it is only a dependable and transparent deceased donor programme that will ensure that the highly lucrative business of organ trade and tourism does not reappear.
Leonardo D de Castro speaks of shifting the burden of donation from the living to the dead (2). He describes how the hitherto rampant organ tourism has now declined in the Philippines in the wake of the DoI, and government regulations controlling organ transplants for non-Filipinos. However, he laments the fact that living unrelated donations are still thriving there, and stresses the need to shift the burden of donating, from the related or unrelated living, to the deceased who will obviously bear no negative consequences of the donations. He however contends that the lack of resources for the bereaved family even to pay the hospital dues and to arrange a decent funeral can in itself be a disincentive which will not let the family even consider donation for transplantation. He believes that such disincentives need to be neutralised by offering to take care of these expenses, but stresses that any such offer should be completely unlinked to organ donation. Given the narrow window of opportunity between the declaration of death and the opportunity for procuring transplantable organs, it is hard to imagine how an offer to pay the outstanding hospital bills and arrange for the funeral of a poor person can possibly be delinked from the request for his organs to be donated, and how exploitation can effectively be eliminated in this arrangement.
Mustafa Al Mousawi describes various measures to address organ shortages in Asia (3) including relevant legislation, transparency in the process and robust and financially sound organisational structures for deceased donor programmes. Like de Castro, Al Mousawi also advocates offering repatriation of the remains of those who donate organs, and goes on to suggest financial support for education or long-term loans for the bereaved family, should the donation materialise. The balance that the two authors wish to maintain between showing gratitude for a voluntary donation as opposed to incentivising the donation by offering monetary and material benefit is an ethical black hole which the transplant community has been trying to steer clear of. While making efforts to improve organ pledges, and for the pledges to be actualised, it is important not to cross the fine line between undue coercion and due compensation. This distinction is easy to blur given the enormity of the problem and the narrow window of opportunity that is often available to secure a pledge and to procure organs. However, it is of the essence that in our efforts to enhance organ procurement, we do not inadvertently open up another avenue for exploitative practices associated with organ transplantation.
Nabil Mohsin reports the development of the live related as well as the deceased donor programmes in Oman (4), and also comments on the positive impact of the DoI on curbing transplant tourism. Underlining the challenges faced in the establishment of a deceased donor programme in the country, Mohsin states that despite measures to the contrary, opportunities for organ commerce in the region are still available, and these undermine all efforts to establish deceased donor programmes, a point also raised by Farhat Moazam and Aamir Jafarey in their report on Pakistan (5). Giving a different spin to the issue, Moazam and Jafarey also raise the issue of affluent countries needing to do more at their end to curb transplant tourism. Instead of laying the blame solely on the doorsteps of poor countries that invariably provide the vendors, they view it more as a global issue needing global countermeasures, and say that more should be done by the affluent countries to prevent their own citizens from going abroad to buy organs, and then coming home to receive support treatment without hindrance.
While describing the progress in deceased donation in India, Sanjay Nagral and J Amalorpavanathan describe the developments in the legal framework governing transplantation (6) from 1994 to 2014. However, they also point out the potential for conflict of interest such as situations for transplant centres which are authorised to declare brain death and then to procure and transplant organs from the deceased, and how this challenges the integrity of the entire deceased transplant initiative in India. They also highlight the practical challenges that such a programme places on the already overstretched, and resource-poor, healthcare system of the country, limitations that most countries in the region share.
Efforts towards establishing deceased donor programmes are essential for the region, as they are for the entire world. However, given the long history of organ trade, with the memories of organ mafias operating with impunity still fresh in the minds of people, much care is needed to ensure that nascent deceased donor initiatives in the region steer clear of ethical controversies, and are regarded as above board, non-exploitative, transparent and trustworthy for people to pledge organs and for their pledges to actually materialise.
Finally, given the resource-constrained and privatised nature of healthcare systems in most of the developing world, transplantation is on trial to test fairness and equity. In deceased donation, wherein organs are in a sense donated to society, this test is even more intense.
References
Chin JJL, Kwok THX. After presumed consent: a review of organ donation in Singapore. Indian J Med Ethics. 2014 Jul–Sep;11(3):139-43.
de Castro LD. Organ donation in Philippines: should the dead do more? Indian J Med Ethics. 2014 Jul–Sep;11(3):143-50.
Al Mousawi M. Reaching self-sufficiency in deceased donation in Asia: harsh realities and ethical concerns. Indian J Med Ethics. 2014 Jul–Sep;11(3):150-3.
Mohsin N, Al-Busaidy Q, Al-Marhuby H, Al Lawati J, Daar AS. Deceased donor renal transplantation and the disruptive effect of commercial transplants: the experience of Oman. Indian J Med Ethics. 2014 Jul–Sep;11(3):153-6.
Moazam F, Jafarey A. Pakistan’s experience with kidney transplantation and trade: a call for international solidarity. Indian J Med Ethics. 2014 Jul–Sep;11(3):156-62.
Nagral S, Amalorpavanathan J. Deceased donation in India: where do we go from here? Indian J Med Ethics. 2014 Jul–Sep;11(3):162-6.