Presumed Consent: Will It Work in India?

Highlights:

• MP Varun Gandhi announced that he will introduce a private member’s bill to promote organ donation
• The proposed bill is likely to be introduced in the upcoming monsoon session in Lok Sabha
• The bill will allow for automatic inclusion of all adult citizens in a national organ donor registry if passed
• The ‘Donation and Transplantation of Human Organ Bill, 2020’ could be the answer to India’s organ donor shortage

Varun Gandhi, MP from Pilibhit, announced during the Organ Donation week, that he would be introducing a private member’s bill in the Lok Sabha which would allow all adult citizens to be included as organ donors in a national registry. He made this announcement through his social media handle on 13th August. The proposed bill could be a move towards bridging the gap between demand and supply of organs and could help reduce deaths due to organ failure in the country. The proposed ‘Donation and Transplantation of Human Organ Bill, 2020’ is likely to be introduced in the upcoming monsoon session in Lok Sabha during August or September. A private member’s bill is unrelated to a parliament member’s political association but is a proposition made in his individual capacity.

The introduction of the bill will certainly make us introspect about the current situation with a deceased donation in the country. The purpose as he said is to increase the donation rates. India’s organ donation rates at less than one per million populationare of great concern, especially with its high road traffic accident rates. Lakhs of people are dying every year waiting for a life- saving donor organ.

Organ donation in India has been heavily reliant on living donors so far and a change in policy would encourage optimal utilization of the potential brain dead donors.

Currently, India follows an opt-in system that allows any adult above the age of 18 yearsto voluntarily register themselves as organ donors if they wish to donate organs after their death. However, it is generally believed that a lack of awareness about organ donation and failure to communicate a willingness to the family has resulted in very few donations taking place in the country. Under the presumed consent scheme all adult citizens are deemed to be organ donors after death and can choose to opt-out from donating.

Countries like Spain and Croatia,which follow the opt-out system have highly encouraging rates of 46.9 and 38.6 per million respectively. England has also recently adopted the presumed consent system effective since May 2020. This was following the success witnessed by Wales, which chose to shift to opt-out in 2015 and has seen a rise in consent rates from 58 percent to 75 percent.The United States which follows opt-in has also been deliberating a shift in policy.

While a few experts around the world are still debating if opting out of presumed consent is the most effective way to overcome organ shortage,there are others who are of the view that this process of consent is infringement by the state on an individual’s rights. The proposed bill will certainly open up a debate on this subject; however, it isunlikely to be taken further, given the complexity of the subject and India’s differential health infrastructure which would not allow anyone who is brain dead in a village to become an organ donor.

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Commentary by Dr.Sunil Shroff, Editor, MedIndia& Managing Trustee, MOHAN Foundation – an NGO that promotes Organ Donation

Presumed consent or opt-out system would only work in countries that have the following:

• A uniform standard of healthcare
• Trust in the healthcare system
• System in the hospitals for brain death identification, certification and maintenance

In India, the healthcare infrastructure is so variable and disparate. The smaller hospitals lack both infrastructure and manpower. Even the larger public sector hospitals in some of the bigger cities do not have the facilities for brain death conversion. The added problem is that most of our healthcare needs, including transplants, are being provided by private hospitals and this has caused the loss of equity as far as care is concerned and slowly resulted in the erosion of trust. In smaller towns and villages there is no possibility of even eye donation, leave alone organ donation.

Spain, which is often lauded for the highest donation rate in the world, had improvement in its donation rate for ten years after passage of the presumed consent or opt-out system. The improvement came about only after proper systems were set up in intensive care units (ICU) for brain death identification, certification and maintenance. The architect of this change was Dr.RMartinez whohas often confessed that it was not the presumed consent that worked in increasing the donation rate,but the systems that were set up in the ICU’s that have helped increase the donation rate in Spain.In fact, there is no opt-out register as such in Spain and consent from family is still warranted before donations take place.

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The 2011 amendment of the Transplantation of Human Organ Act &the Rules of 2014 in India has sufficient provisions like ‘Required Request’ where the intensive care doctors are required to give the option for organ donation to the relatives in event of brain death. However, this is seldom implemented and there are no audits. The mandated choice provision in the driving license is another instrument that has just been rolled out, however, enough awareness has not been created about this provision.

We fail in India in implementation; the current transplant law is good, but has no teeth as the appropriate authority that is supposed to implement the above provisions and also work as an oversight committee is seldom in a functional state and mostly exists only on paper. It is usually lead by a junior level clerk and acts only to review papers for transplant license and send doctors to hospitals for inspection.

Taking all these factors into consideration, the government needs to implement all the provisions in the current law more effectively rather than introduce presumed consent concept at this stage of the program. A consent process that could only widen the trust deficit has marred our healthcare system.

References:

1. Varun Gandhi To Float Bill Making Organ Donation "Compulsory" For Adults - (https://www.ndtv.com/india-news/world-organ-donation-day-bjps-varun-gandhi-to-float-bill-making-organ-donation-compulsory-for-adults-2278908)
2. Put all adults in organ donor registry: Varun Gandhi to move Bill - (https://www.tribuneindia.com/news/nation/put-all-adults-in-organ-donor-registry-varun-gandhi-to-move-bill-126041)
3. Varun Gandhi to bring private member bill for registration of all adult citizens as organ donors - (http://timesofindia.indiatimes.com/articleshow/77521971.cms?utm_source=contentofinterest&utm_medium=text&utm_campaign=cppst)
4. Opt-out Organ Donation Could Affect Transplant Waitlists - (https://www.medindia.net/news/healthinfocus/opt-out-organ-donation-could-affect-transplant-waitlists-190747-1.htm)
5. All adults in England to be deemed organ donors in 'opt-out' system - (https://www.theguardian.com/society/2020/may/19/deceased-uk-adults-to-be-deemed-organ-donors-in-opt-out-system)

Source-Medindia