Curbing Illegal Organ Trafficking Means Protecting the Most Vulnerable

Rising demand for medical services worldwide means, among other things, more patients in need of organs for transplant. Supply of organ donors in many countries has unfortunately not kept up. Growing networks of “organ traffickers” are entering the void and inducing impoverished adults in some developing nations to sell them their kidneys and other organs. Patients receive needed organs, but the “commercial living donors” suffer severe emotional and physical harms.

Rick Docksai, staff editor for THE FUTURIST, recently spoke about the issue with Dr. Debra Budiani, director of the Coalition for Organ Failure Solutions, a nonprofit group that works with national governments and nonprofit groups in the affected countries to combat organ trafficking and to promote the safer, ethical alternatives—i.e., voluntary organ donations from living donors and the recently deceased.

THE FUTURIST: What first interested you in this issue? And what inspired you to found the Coalition for Organ Failure Solutions?

Debra Budiani: I began in 1999 to study health concerns of Sudanese and Somali asylum seekers who sought asylum in Egypt. I was looking at the health concerns that were a consequence of seeking refuge and displacement. "The Refugees' Quest for Care," I titled my dissertation. They didn’t have nationality or any source of income. They were extremely marginalized...

I started to look at the health concerns of displacement, and Cairo was an important center for many asylum seekers because it was the headquarters of the UNHCR (United Nations High Commission on Refugees) in the Middle East. I interviewed hundreds of them and they almost universally shared a fear of organ theft as an obstacle for them getting care.

They were very frightened of Egypt’s medical centers and would not use them. They preferred even delivering babies at home. And so they really only went to Egyptian clinical settings when they absolutely had to, and even then they were horrified of organ theft.

That made me start to look at organ transplants and ask ‘who are the organ donors?.’ Although some of their stories may have been exaggerated and were based on their fears, nevertheless it was clear that a major underclass of people were being relied upon for their organ supply.

I started to feel that there was no other avenue for me to combat organ trafficking. I had to create the place, and I really value doing it from a nonprofit, grassroots-based approach that was looking at the issue from below and not from above, as many medical professionals and policymakers approach it.

THE FUTURIST: You said that even though some of their claims were exaggerations, there was truth behind them. How did you discern this?

Debra Budiani: It only took looking around and asking who are the donors. There are marginal groups who are exploited for organ supplies.

Theft can happen, when it's outright stolen, but it also happens when individuals are induced to give consent and they are not paid or are paid only a fraction of what they are agreed upon.

But there was a whole other phenomenon of targeting vulnerable people for selling organs—especially those whose refugee protection was rejected by the UN. They were especially vulnerable, and there were ways they could be targeted.

THE FUTURIST: Demands for a lot of medical services in the industrialized world are projected to increase, according to researchers. They argue this based on rising life expectancies and fast growth of populations of persons ages 65 and older. What are we seeing now in terms of overall demand for transplant organs? Where is it trending? If it is going up, then what is pushing it up?

Debra Budiani: It is going up, and when we see the waiting lists rising in countries like the United States, that is an indicator that the demand has gone up. What's also happening is that it's being prescribed more. Some transplanters would argue that doctors are creating the notion of scarcity.

Of course, we agree that it is a preferred therapy but it’s a therapy of human origin and fundamentally social in nature...But there is the broader theoretical question of whether supply can satisfy demand. Spain has been very successful in this. They do a phenomenal job of managing the waiting lists and satisfying demand, but globally many countries have a huge challenge ahead of them to try and increase their organ supply, especially through the use of deceased donation.

What’s pushing demand up, especially in the case of kidney failure, it's diseases like diabetes, which cause renal failure. There are other diseases, too, but that’s a primary one.

THE FUTURIST: You also can attest that the individuals who sell their organs all too often suffer grave consequences in terms of personal health and social standing. Please describe this a bit for our readers (citing any relevant survey statistics).

Debra Budiani: I think the best reference is the series of research that I conducted on commercial living donors in Egypt between 2001 and 2006. I personally surveyed 190 commercial living donors within those five years, and 78% reported deteriorations in their health following the transplants. Also, 73% said that they could no longer work in labor-intensive jobs; their energy levels and strength dipped as a result of the transplants and never returned to where they were pre-operation.

Their decision to sell their organs affected them mentally and emotionally, too. There is a lot of shame and stigma attached to being a commercial living donor: 68% never told anyone about their decision, and 91% felt socially isolated because of their decision or because of the consequences stemming from it. Altogether 85% were not willing to be known as organ sellers.

THE FUTURIST: In what countries are the organ traffickers most active? And why?

Debra Budiani: There are host countries and client countries. The top host countries include China, the Philippines, India, and Egypt. Why? There you have transplant technology and an underclass of people. That makes for prime circumstances for the organ trade, and especially in that they are countries that are willing to host tourists from abroad.

In Egypt, most of the commercial transplants are internal modes of organ trafficking. The victims are Egyptian, and their organs are received by other Egyptians.

Before we go further, I will explain why we use the term “victim.” It’s a word that’s been problematized, since they give some kind of consent, but it’s an induced consent based on their conditions of vulnerability. They’re not informed well, and there is always a play of power on the vulnerable.

The definition of organ trafficking from the Istanbul declaration (an international accord condemning organ trafficking, ratified by the International Summit on Transplant Tourism and Organ Trafficking, which convened in Istanbul, Turkey, April 30-May 2, 2008) is the procurement of organs “by means of the threat or use of force or other forms of coercion, of abduction, of fraud, of deception, of the abuse of power or of a position of vulnerability, or of the giving to, or the receiving by, a third party of payments or benefits to achieve the transfer of control over the potential donor,” for the purpose of obtaining organs for transplant.

THE FUTURIST: Some people are hopeful that stem-cell treatments and other new medical procedures will eventually enable doctors to “grow” new organs and tissues right in the hospitals and labs. How realistic a solution is this to the shortage of organs available for transplant?

Debra Budiani: I’m not certain that it’s going to happen in my lifetime or not. There is not enough evidence that it's going to lead up to that.

Today I got an email from a colleague who is a heart surgeon, and he told me that now there are some surgical techniques that can remedy the prescription for a heart transplant for diagnoses. There are other solutions on the horizon. But renal transplants will probably continue to develop more quickly than stem cell procedures.

THE FUTURIST: If too few people are voluntarily donating organs, it seems only natural that organ traffickers will find willing markets of buyers to whom they might sell organs. To what would you attribute the current scarcity of organ donors? What is COFS doing to promote organ donation? What can governments and other private organizations do to help?

Debra Budiani: In much of the world there is not a social awareness or willingness toward organ donation. So what a few of us and other parties who share the mission of enhancing altruistic and deceased donation are trying to do is to create that awareness and create the system: There need to be systems of national self-sufficiency, and we need to develop them together to enhance donation methods from deceased and altruistic donors.

Countries need to create national self-sufficiency in their organ supplies. That’s a goal of the World Health Organization, and we work to promote that.

The legal framework we work to promote in host countries is one that criminalizes organ trafficking and legalizes deceased donation. And organ donation protocols need to be tight to ensure that abuses do not occur. It’s difficult because we can’t regulate relationships, but we can assess vulnerabilities.

THE FUTURIST: There are laws in most countries against organ trafficking. Why are they not being enforced? What will it take to improve worldwide enforcement?

Debra Budiani: Part of it is we need to work better to enhance supply, but to enforce the laws it would take enforcement from the institutional levels: of transplant centers. It’s important that there are surveillance mechanisms so that the transplant centers have methods of assessing donor and recipient relationships, because if institutions aren't monitored, the circumstances for abuse can occur.

It really takes enforcement on an institutional level, at the transplant center level and the donor recipient assessment process. There have to be adequate surveillance of transplant practices. That’s also what we’ve suggested in the World Health Organization guidelines and the Istanbul declarations put together by the experts that convened to make those recommendations.