New Internationalist

The Organ Donors’ Bill of Rights

Web exclusive

Nancy Scheper-Hughes is Chancellor’s Professor of medical anthropology at the University of California, Berkeley, and director of Organs Watch. She advises the WHO, the UN Anti-Trafficking Office, and TTS, the Transplant Society on the hidden injuries of transplant trafficking. Here, she shares her thoughts on this month’s Argument: ‘Is it ever right to buy or sell human organs?’

To help combat the illegal trade in body parts, I have written a Bill of Rights which has been distributed in several languages in villages and urban slums which are being targeted by organs brokers.

Article 1. All humans have the right to bodily integrity. Organs are every person’s birthright, their bodily patrimony. Humans both are and have a body. (A post-Cartesian notion of the person is not ‘cogito ergo sum’ but rather ‘I am embodied, therefore I am’.)

Article 2. There are no ‘spare’ kidneys, lungs, or part-livers. To share these human parts is a sacrifice not to be normalized, routinized, or taken lightly.

Article 3. Although living donation is honorable and ethical, it is never to be presented by the recipient or his surgeons as an obligation.

Article 4. Green donation (deceased donors) should be the default system. Red donation (living donors) should be viewed as the exception, not the rule.

Article 5. Acknowledge that vulnerable populations – young people, the unemployed, prisoners, the mentally ill, the mentally deficient, guest workers, the uninsured, economic and political refugees, those in debt – are exploitable and that the ‘choice’ to sell a kidney is often coerced.

Article 6. Recognize the role of relative power/powerlessness based on gender, race, class, education, citizenship, nationality in organ selling, transplant tour, internet brokering schemes.

Article 7. Establish a principle of solidarity with the weak, the frail, the sick and the economically and existentially shaken.

Article 8. Recognize that the medical, psychological, social and political consequences of kidney selling, like the scars themselves, are often kept hidden from view.

Article 9. Revise hospital protocol to increase surveillance of living donation to include a ‘donor’s doula’, a guardian-advocate at the bedside, independent of and un-beholding to, or financially dependent on the transplant team, to represent the living donor during screening, surgery, and post-surgical follow up.

Article 10. No living organ donation from the unemployed or medically uninsured.

If you’re willing to ask a living person, a total stranger, to rescue you from the queue of those patiently waiting for a deceased donor organ, or from the onus of asking a relative or close friend to rescue you from dialysis, be aware that you entering a moral, social, ethical, and political grey zone. You’re putting the seller and yourself at risk. Be aware of the collateral damage to the families of kidney sellers and to the economically battered communities where kidney brokering and selling has destroyed trust, broken homes, eroded agricultural, fishing, construction and other work opportunities. In some hard-hit villages and slums from Latin America to Eastern Europe to Asia, the obligation to sell a kidney to save the family is being passed down from the father to his wife to oldest sons and even to underage children whose bodies are now seen as the family piggy-bank.

If you were able, as I have been, to talk to kidney sellers the world over, you would find that even years after the operation, the sellers are still suffering from its effects on their bodies, minds, social status, intimate relations, and working lives

Despite what you may have heard from some surgeons or from transplant brokers, the kidney is not a ‘spare’ organ. If you were able, as I have been, to talk to kidney sellers the world over, you would find that even years after the operation, the sellers are still suffering from its effects on their bodies, minds, social status, intimate relations, and working lives. Medical journals do not report on the invisible and long-term consequences of kidney selling, which include: decreased physical and mental well-being, chronic pain, depression and suicide, self-hatred, distorted body image (‘half-man’ syndrome), anger, social rejection, isolation, physical abuse, battering, and forced exile from their native communities. There are new syndromes that don’t appear in medical textbooks: phantom kidneys, kidney regret, kidney-impotence, bodily evacuation (the body without organs), chronic pain at the site of the surgical scar, empty burning space, and the attribution of all subsequent troubles to the ‘missing kidney’. Economically, kidney sellers are worse off a year after selling their kidney. Because most kidney sellers are poorly educated and are unskilled labourers who rely on the strength of their bodies, many are excluded from work that requires them to lift heavy objects, to leap and jump, to be fearless and unconcerned about the effects of ordinarily rigorous work on their bodies. They fear death. In Bangladesh and Pakistan, kidney sellers refer to their kidney removal as ‘the day I died’, a reference to their economic, psychological, spiritual, and social death. Many seem to have lost their already tenuous existential niche in the world.

Underground markets run by organs brokers and kidney hunters trawling poor communities exploit the desperation of both buyers and sellers. If your rational reply is: ‘Don’t criticize. Legalize the sale of organs’ then we need an organ sellers’ bill of rights to assure that sellers know the broader risks, and so that they won’t be treated as living cadavers, as containers of recyclable biological and medical material and energy to be siphoned off to the highest bidder. Even a regulated system will have to rely on ‘match makers’ and intermediaries. Hospitals and transplant teams cannot be left with the responsibility to monitor legally mandated paid donation of living people’s organs. Transplant teams in the US have failed to identify cases in which force, coercion, and fraud have motivated seemingly willing and informed consent to forfeit an organ. We need independent living donor/seller advocates – guardians of the body of the donor who have nothing to do with the medical or financial elements of the transplant who can verify that the ‘deal’ cut is fair, un-coerced, and that there are no other social or medical or psychological reasons for prohibiting the sale. Kidney sellers require unions and collective bargaining because as a potential labour force they constitute the poorest, weakest, and most vulnerable people on the face of the earth. Finally, if you’re going to plunge into the bodies of the poor, who appear to be (but may not in the long-term prove to be) healthy people, make sure that no-one becomes a kidney seller who does not have access to adequate medical insurance for the rest of their lives.

But in the final analysis, if you are able and willing to pay someone for a kidney (or a liver lobe) to save your life, please make sure that the money is paid to someone you know, even to someone you love, someone who you will be able to watch out for over the long term should their health fail and, turning the tables, they may need you to give them a helping hand. You can’t put a price on life, but you can exchange money with a promise of mutual trust and care. We do it all the time in our families and friendships. It’s called open-ended reciprocity and it is what makes social life possible in the first instance.

Comments on The Organ Donors' Bill of Rights

Leave your comment