In August 2016, Surat resident Brijkishore Jaiswal needed a kidney transplant and was all set to receive one from Shobha Thakur, a 42-year-old domestic worker from rural Gujarat. But in order to get the kidney, Jaiswal tried to pass Thakur off as his wife and said that she was donating the organ altruistically. Jaiswal was paying Thakur for her kidney and thus breaking the law, which bans commercial organ donation.
When the racket, involving doctors at the Dr LH Hiranandani Hospital in Mumbai, came to light, Thakur was left stranded by the hospital. The doctors had begun the surgery with her, but were stopped by the Mumbai Police before they retrieved her organs. She was arrested in the case and had to remain in prison five weeks after bail was granted as she did not have the money to arrange for it, nor was anyone from her village willing to arrange for a guarantor from her. Non-profit organisations like the Centre for Enquiry into Health and Allied Themes and Human Rights Law Network in Mumbai helped Thakur after her arrest.
Thakur’s case is an example of how India’s organ transplant laws do little to protect organ donors, who are often from poor socioeconomic backgrounds and sometimes coerced into making the donation. At a recent meeting of doctors, legal experts, activists and a government representative, on possible changes to the Transplantation of Human Organs Act, most people agreed that donors often agree to transplant procedures due to coercion or a dire need of money, and need to be protected as victims and not seen as perpetrators of the crime.
As per the Act, both near relatives and unrelated persons can donate an organ to a recipient. A near relative can make the donation after a hospital committee instituted by the hospital where the transplant operation is going to take place permits it on the basis that the donation is purely altruistic. An unrelated donor has to be vetted by a state government appointed committee. Any kind of organ trade, involving money or other remuneration, is illegal.
However, as many organ donation rackets that have been unearthed in India have shown, patients who need organs and are unwilling or unable to wait for a cadaver or altruistic donor rely on middlemen to find donors. The recipient pays both the donor and a fee to the middleman. Sometimes, doctors themselves connect their patients to these middlemen and get a cut of the transaction.
When these rackets are busted, the law penalises the organ donor as well as the others involved. The law allows for the donor to be arrested for the offence that attracts between five and 10 years in jail and a fine of between Rs 20 lakh and Rs one crore.
The Vidhi Centre for Legal Policy, a non-profit think tank that organised the meeting to discuss the law, has brought out a research reporton the Act in which it notes that in case of organ trafficking, the buyer and the facilitator of the transaction will be usually better off, and often the donor is from the poor, marginalised section of society. The report notes infers that “In such a situation, the victim cannot be treated on the same footing as the buyer of the organ. A human rights-based approach to organ trafficking also requires that the victim be placed at the center of any initiatives to combat the practice.”
Is consent really informed?
Organ donors are required to sign a brief consent form which leaves the donor open to criminal prosecution and contains no information on the risk of donating an organ.
“The affidavit that a donor is supposed to submit does not address the issue of coercion, deception, or abuse,” said advocate Veena Johari, who works on health rights. “Besides, there is nobody monitoring these processes. Who is checking if the consent is really an informed one? That is why abuse is happening.”
To ensure that the consent provided by the donor is informed, the doctors have to spend time with the donor, and speak to the person in private, explaining the consequences of the surgery.
Dr Sonal Asthana, a liver transplant surgeon in Bengaluru, recalled an instance where a recipient’s female family member was under pressure to donate her liver. She was only able to tell the doctor in private that she did not want to undergo the surgery. The doctors followed her wishes and informed the family that she was medically unfit for the surgery.
Maintaining data on the outcomes of the surgeries can also help donors make a decision about organ donation. For instance, very few donors are told about the risks of death among donors, especially in liver transplant surgeries.
While developed countries such as the United Kingdom and the United States maintain registries on outcomes of the transplant surgeries, there is no such data collected in India. Dr Anil Kumar, national programme officer with the National Organ and Tissue Transplant Programme, said that so far it has been very difficult to collect information even on the transplant surgeries in various states, let alone outcomes of surgeries.
The National Health Services has issued an information bookletfor donors which states that 20% of liver donors experience complications. There is also 0.5% to 1% risk of death, as per the results reported from all centres around the world.
Dr Sanjay Nagral, a liver transplant surgeon from Mumbai, said that often when doctors speak to donors privately about the complications of the surgery, they can tell if the donor has agreed to donate the organ willingly or is being coerced.
“We do not see many doctors telling the donors that they can die of the surgery,” he said. “We need to have an opt-out mechanism for the donors.”
Decriminalising donors in illegal transplants
Another indication of coercion in organ transplants lies in statistics that show that most donations are made by women and people who are poor.
Kumar said that though the government has not tabulated the exact figures, at least 60%-70% of live donations are done by women. The government has not data on the gender of donors, so far. Conversely, many more men compared to women are recipients of organs. In a 2013 Tamil Nadu report, where most transplant surgeries in the country take place, 72% of men undergo surgeries, as compared to 28% of women.
Dr Amalorpavanathan Joseph, who was heading the organ donation and transplant programme in Tamil Nadu said that end stage renal failure which requires transplantation of kidney is caused mainly by diabetes and hypertension. Both these ailments are common among both men and women. In liver failure cases which require transplantation, alcoholism is one of the major causes of the failure, and perhaps men are more affected as compared to women.
As Johari pointed out, so far, the law has not managed to stop either organ trade or exploitation of donors. Decriminalising victims of organ trade rackets will enable them to come forward and approach authorities, without fear of prosecution, the Vidhi Centre report noted. The report also recommends that state should provide free medical treatment to the victim donors and introduce long-term compensation schemes for the people who suffer long-term disability or illness as a result of trafficking.