UHRC, legislators disagree over consent for organ removal

Officials from the Uganda Human Rights Commission (UHRC) and their counterparts from the Uganda Law Society (ULS) yesterday disagreed with the members of the health committee of Parliament over the need for free consent and also free revocation when it comes to organ removal.

While the committee members wanted the time frame for revocation of consent be longer, both UHRC and ULS demanded that the time frame must be before the onset of operation to remove the organ.

Ms Esther Mbayo, the Luuka District Woman MP, said while there must be free informed consent, revocation of the same must be regulated so that the recipient is not left stranded at the last minute. 

She said it takes time to prepare patients for organ transplant and that revoking consent at the last minute will leave such patient traumatised.

“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.

Ms Mbayo was supported by Col Dr Victoria Nekesa, one of the Uganda People’s Defence Forces (UPDF) representative to Parliament. Narrating her own experience, Dr Nekesa said she one time sent a donor and patient to India, but when they reached there, the donor revoked his consent and it created a big problem. 

“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,” she said.

Dr Charles Ayume, the committee chairperson, agreed with his colleagues. He said while consent can be revoked, it should not be done at the last minute to create panic. 

“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,” he said.

Several other legislators supported the move, but it faced resistance from both UHRC and ULS, who argued that just like freely consenting, there must be no conditions attached when withdrawing the same up to the tike before the operation. 

Ms Shifrah Lukwago, a member of the Commission, who led the team from UHRC, said while any intervention in the health field can only be carried out after the person concerned has given free and informed consent, the person must not be under any duress in withdrawing it.

“Donors should be free to revoke or withdraw consent anytime before the procedure is done without giving any justification,” she said.

She added: “We deal with human rights issues and anything that affects the right of people, we are very strict on it, so the issue of consent 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.”

Ms Monica Kyamazima, the Willow International country director, and an advocate with ULS, told the committee that the issue of revocation of consent is non-negotiable.

“I agree with UHRC that where consent is freely given, no condition must be attached while withdrawing it. This is the best practice and, therefore, someone is free to do it as long as the operation has not yet started. It can only be rejected where the procedure has already started because at that point, it will be too late,” she said.