Welcome to the second issue of the DICG newsletter.
Covid 19 has proven to be a tumultuous experience for everyone across the globe. We hope that once the Covid 19 "curtain" has lifted, we will not discover significant unethical transplant activities being conducted "behind the scenes."
Our community remains strong throughout the turmoil, we look to our endorsing organizations and the global transplantation community to continue promoting ethical transplant practices world-wide.
We start the second newsletter with a letter from Sanjay Nagral, a transplant surgeon from India and one of the co-chairs of the DICG who just started his term in January, 2021.
A few years ago, I was introduced to the DICG, a remarkable group of transplant professionals and ethicists who have strived for more than a decade to highlight and combat organ trafficking and unethical practices in global organ transplantation. This group had originated from a meeting held in Istanbul in 2008 where the Declaration of Istanbul, a significant document on organ trafficking and transplant tourism, was put together by individuals from many countries. I found its focus and work particularly relevant as I come from a region that has seen this modern form of slavery in its history. Also where with notable exceptions, professionals and their associations have sometimes been complicit and often not been very vocal about these issues.
South Asia in general and India, in particular, went through a phase of significant trafficking and commercialism in kidney transplantation. With many countries in the region promulgating laws outlawing the organ trade, there is now a semblance of regulation and control on this activity. However, the potential for the trade remains alive and, in fact, does rear up its head periodically. The background of severe social inequality and the fact that deceased donation has still not taken root in the region provides the backdrop.
During my work with the DICG, I have had the opportunity to interact with courageous professionals who have devoted significant time to the issue, even at the risk of being isolated amongst their peers. I have had the honour of being nominated as the co-chair of the DICG starting in 2021. Along with my co-chair Eric Rondeau, colleagues on the DICG council as well our mother organizations TTS and ISN, we hope to carry forward the agenda of the DOI.
I am aware that given the severe demand for organs, the task set out before us is humungous. We are also passing through one of humankind's toughest existential challenges in the form of the Covid pandemic, which has exacerbated the demand supply gap in transplantation. However, it is clear that we cannot progress without active participation and sustained pressure from the global transplantation community. This newsletter is one small step towards this.
In this section we carry links to recent news articles related to the DOI’s concerns.
The explicit intention behind this section is not to discredit the work of colleagues or further rumours. Therefore, we will try and stick to reputed and reliable news sources. Additionally, we are educating ourselves on the ethics of journalism and are learning about how we can more responsibly report on the news.
Earlier this month saw the publication of a major investigative piece by the New York Times on what they have described as a large paid kidney donation activity in Herat in Afghanistan. The DICG along with the TTS have written to the hospital authorities to obtain more information on the matter.
The renewed focus on the issue of racial disparity in healthcare has been the subject of many recent journal articles, including articles dealing with organ donation and transplantation. Whilst the Declaration of Istanbul (DoI) does not directly address racial inequalities, one of its principles clearly states that 'Organs for transplantation should be equitably allocated within countries or jurisdictions, in conformity with objective, non-discriminatory, externally justified and transparent rules, guided by clinical criteria and ethical norms.' It is not the DoI's nature to detail how to deal with such issues, but it provides universal principles guiding ethical organ donation and transplantation practices globally.
In this edition of the newsletter, we've collected some complementary articles, contributing to our understanding of the nature and ethics of racial discrimination in organ donation and transplantation. The DICG does not necessarily endorse each of the individual articles' recommendations but wishes to build on a library of resources for DICG members to use while addressing unfair discrimination in practice.
This month's publication selection has been prepared by Maryn Reyneke
Author: Kimberly Jacob Arriola
Journal reference: Journal of Health Care for the Poor and Underserved 28 (2017): 30–45.
Summary: This normative article by Jacob Arriola takes two major theories and places them in the practical context of transplantation. The author motivates us to move beyond the documentation of ethnic disparities in transplantation but to get a deeper understanding of why these disparities exist. The role of racism is complex, and prevention or compensation interventions often do not address the problem's multiple and interconnected layers. The paper gives a detailed overview of the manifestation of racism, namely internalized, personally- mediated, and institutionalized racism, and describes how they can be recognized in the different levels of the social ecology of healthcare and transplantation. This paper concludes with clinical, research, and policy recommendations.
To do so, they made use of advanced google searches and interrupted time series analysis methodology. They collected data on “kidney trade,” “kidney sale,” “organ trafficking,” and “transplant tourism” reporting in 25 different countries with time points well before and after the 2008 promulgation of the DoI. They found that the DOI has a positive impact on the reporting of “organ trafficking” and “transplant tourism” but not on the reporting of “kidney sale” and “kidney trade.” They conclude to say that the increased reporting of “kidney sale” and “kidney trade” can be indicative of an impact of DOI on public awareness and increased reporting of the residual transplantation related crimes.
The authors then provide commentary, seemingly unrelated to the study conducted, and advocate for the legalization of organ trade. While this commentary is in direct conflict with the principles of the DoI, the results ofthe research could still provide valuable insight into the impact of the DoI.
Author: Reese, P; Mohan, M. et al.
Journal reference: American Journal of Transplantation. 2021;00:1–10.
Summary: Preemptive renal transplantation holds various benefits for patients with end-stage renal disease and should be the aim of all transplant programs. Reese et al. recognized that preemptive renal transplantation practices also give us a clear case presentation to study the effects of systematic racial disparities. Their article provides an excellent description backed up with empirical data of where and why White, better educated, and privately insured patients access the benefits of preemptive transplantation more than other racial groups. They, furthermore, provide an ethical analysis of one of the main exacerbation factors, namely allocation policies based on the first-come-first-serve approach, and propose initiatives to improve this inequity.
Author: Wesselman, H.; Ford, C. G. et al.
Journal reference: Clinical Journal of the American Society of Nephrology. 2021. Vol 16. Issue 2
Summary: In the article by Wesselman et al., the authors pin down the medical and social determinants of health associated with racial disparities in transplantation by prospectively examining 1056 patients referred for renal transplantation. While it is no surprise that their study confirmed the high incidence of renal failure, combined with a lower rate of deceased and living donor transplantation in Black population groups, this study contributes to our nuanced understanding of where inequalities exist. The data provides insights on how to tailor transplant education, deploying media campaigns to increase awareness of transplant options, and support disadvantaged groups through the process of organ donation and transplantation.
Approximately every other month, the DICG council hosts thematic discussions around topics relating to the DOI's concerns, including emerging issues in ethics and equity in global transplantation. This month, there was a thematic discussion on "The impact of transplantation in the private sector; Lessons from South Asia" lead by Sanjay Nagral.
In March, we will have another thematic discussion on "Gender disparity in access to transplantation" which will be lead by Nancy Ascher.
We look forward to reporting on these two thematic discussions in the next newsletter.
The DOI has been endorsed by numerous organizations. This list and the procedure for endorsement is available on our website. We look to our endorsing societies to help further the principles of the DOI. We ask that our endorsing societies make sure that their logo and information is correct on the site. Additionally, we welcome endorsing organizations' to send news or event notification. If applicable, we will carry it in the next newsletter.
The newsletter is brought to you on behalf of the executive council of the Declaration of Istanbul Custodian Group which works to protect and promote the principles enunciated in the Declaration of Istanbul(DOI), a landmark document in the history of global transplantation.