Parliament clashes with human rights body over organ donors' consent withdrawal

The legislators and rights bodies were airing their views on the Uganda Human Organ Donation and Transplant Bill passed last year, 2021.

Members of the committee proposed that there needs to be regulation of the time frame that a donor has to revoke his/her consent. In addition to regulations, they wanted the time frame to be longer.

In contrast, both UHRC and ULS insisted that the time frame must be limited up to the point before the operation begins.

Luuka District legislator, Esther Mbayo, said that free consent is priority and it should be informed but to revoke it must be regulated to avoid psychological distress on the recipient's side.

Mbayo said that due to the nature of the procedure, the patient and medical teams would suffer greatly under long preparations only to come up empty due to unchecked withdrawal.

“Colleagues, we need to handle the issue of revocation of the consent carefully. A potential donor cannot just wake up at the last minute and decide that he or she is withdrawing his or her consent and yet the recipient has already been prepared. This will leave the recipient in bad state, so I propose that the time frame should be longer,” she said.

UPDF representative to Parliament Col. Victoria Nekesa seconded Mbayo saying that she had firsthand experience of chaotic sanction. She said that in the past, she sent a donor and patient to India for a transplant but the donor revoked his consent at the last minute which created a problematic situation.

“It would be better if a reasonable time frame is given for revocation of such consent so that there is time to seek another donor,” Nekesa said.

The committee chairperson, Charles Ayume agreed with his colleagues. He said that 11th hour revocation can have fatal consequences.

“While it’s true that someone can freely consent and also revoke, we need to be cognisant of the time frame, otherwise it will become a problem. It takes a long time to prepare someone for operation and canceling it at the last minute because a potential donor has revoked consent can be dangerous,” Ayume said.

UHRC members, led by Shifrah Lukwago, opposed this argument citing that just as consent is given freely, it is liable to be revoked without conditions nor justification before the operation. The commission suggested giving donors sufficient data on the procedure in advance but beyond that, maintained freedom of consent withdrawal.

“Donors should be free to revoke or withdraw consent anytime before the procedure is done without giving any justification. We deal with human rights issues and anything that affects the right of people, we are very strict on it, so the issue of cosent is one of those we cannot compromise on. What the council must do is to provide adequate information to the potential donor in advance so that they make an informed choice,” Lukwago said.

Advocates from ULS also maintained that as long as the operation is not underway, the donor is allowed to walk away.