Thursday, March 26, 2009

Human Organ Transplants Act (HOTA)

I rise in support of the good intentions behind these amendments. They are clearly noble. Who could disagree with giving more hope to those whose lives hang in the balance, and whose only prospect of survival is to receive a transplant?

So the repeal of the prohibition against removing organs from a deceased person over 60 years old is timely. So long as the organs are healthy, there is no reason to impose artificial age limits for prospective donors. Likewise, the enhancement of penalties.

The amendments to allow a donor to receive compensation are more controversial. Many around the world will criticise us for this move. But as a matter of principle, I see no difficulty with it.

Some have argued that many countries have not allowed this, so we should not. That by itself is not a good reason not to do something. Some say it is immoral to donate your organs for money. I say it is equally, if not more, immoral to simply ask patients to accept death gracefully when there is a feasible option. It is also immoral to stop someone from saving a life, if that is his real intention.

What are the critics really concerned about? That this new regime will prove an irresistible source of income for the poor, the ignorant and the desperate, and that ultimately, the rich will obtain transplants at the expense of the poor. These are powerful, emotional arguments which cannot be ignored.

But what is the reality? A father of a friend died on an operating table in India during a kidney transplant; an acquaintance of mine is still alive after receiving a kidney in China. Many of us know similar stories. This is a life and death issue. People who face death will move mountains to survive, and do things and take chances which most of us would not even dare think about. So there is a thriving black market, where organs are traded for huge sums of money, and the poor, the ignorant and the desperate will continue to be a ready source of organs for those who can pay. HOTA did not bring about that situation, and these amendments, if properly applied, are not going to make it worse. In fact, creating a framework to handle compensation for organ donation may help stem the rise of a black market.

But there is no doubt that even with the enhanced penalties, introducing a financial element will prove too tempting for some to make money from donating their organs, and for others to take advantage of that temptation. We cannot leave the weaker members of society to fend for themselves. We need to ensure that the law and spirit of HOTA are preserved.

The key phrase, which appears in the Explanatory Notes to this Bill, is “altruistic living organ donor”. In other words, the amendments are not supposed to facilitate transplants by persons who are motivated by money. Further, as I understand them, these amendments do not remove the requirement that there must be a deep emotional connection between the donor and the recipient. Could the Minister clarify this? If a relative or close friend of the patient is willing to give up his kidney to save him, but is naturally concerned about his own future medical expenses and potential loss of earnings, why should we not allow the patient to compensate that relative or friend?

The problem is that the amendments do not say all this. The phrase “altruistic living organ donor” appears in the Explanatory Notes, but not the amendments themselves. The requirement that the donor and recipient must have deep emotional ties is also not found in HOTA.

Therein lies my difficulty with these amendments, and with HOTA in general. The vital organs are missing. Let me explain.

The way the Act seeks to ensure that organ trading does not take place and that donors are not exploited is to depend on the Hospital Ethics Committees to assess the application, and to approve or reject it. But HOTA and its regulations make it clear that this committee is not equipped for this important role.

Section 15B of the Act provides that the committee shall consist of not less than three persons, of whom one shall be a medical practitioner not employed or connected with the hospital and one shall be a lay person. But the lay person apparently can be employed or connected with the hospital. In other words, that committee can be constituted by a majority of persons who have an interest in promoting the business of the hospital. In fact, the third person, the medical practitioner not connected with the hospital, may be from another hospital which carries out transplants or is otherwise interested in promoting transplant operations.

Of the persons sitting on the committee to decide a particular application, the only disqualification from participating are that they cannot be directly involved in the care of the donor or recipient, or will be involved in the transplant procedure. Surely, there are other obvious instances of conflicts, such as blood relations or friends? But the members of the committee are not even required to declare their interests.

Further, neither HOTA nor any other law or regulation sets out how the committee is to discharge its duties. All it has to do is submit a report of its decision to MOH. What that report should contain is not clear. The committee has complete discretion in the manner of its deliberations. It has the power to make rules to regulate its own procedure. There are no requirements to keep a record of the proceedings or the interviews with the donor or the recipient, so we do not know what questions, if any, were asked. In fact, the committee is not even obliged to interview the donor or the recipient. Why is that not a mandatory requirement? How is the committee able to properly discharge its duties unless its members actually speak to both donor and recipient? A committee can therefore rubber stamp an application and no one would be the wiser. The committee is obliged to have regard to the considerations of “public interest and community values” when assessing applications. But these terms are not defined, so the committee decides what they mean. There is no accountability for its decisions. The MOH does not carry out audits of the files (if any) kept by the committee. I could go on.

The Hospital Ethics Committee currently represents our only real check against abuse – yet we demand so little of it. The hospitals may argue that it is not their responsibility to determine if what is declared by the donor and recipients is true. If that is the case, then it would appear that no one is taking any responsibility for this entire process – not the doctors, the hospital or the Ministry.

If we are going to allow compensation, and if we are serious about not allowing organ trading, there clearly needs to be a complete overhaul in the manner in which applications are approved. I know the Minister would prefer to keep things flexible. But flexibility without accountability is a not a good recipe. Otherwise, a law which has such good and noble intentions may fail in its execution. That would be a real shame.

These matters should be addressed in HOTA, or at the very least, in subsidiary legislation. If any Hospital Ethics Committee is not prepared to assume these basic obligations, transplants should not be carried out at the hospitals it represents. There is also no reason why MOH should not audit every approved transplant to ensure that the letter and spirit of HOTA have been observed. It will provide an essential check to ensure that the committees are doing their job. Surely, that is not an onerous obligation. How many living donor transplants take place every year? Even if many, is that not the least MOH should do in the public interest? If it does not, who will?

Improving the process will not reduce the number of genuine donors. May I ask the Minister if he intends to improve the current approval process, and if so, what he proposes to do?

Likewise, I am not comfortable leaving the details of the compensation scheme to another committee without any legislative guidance or oversight. Delegating may be a convenient and efficient way of dealing with these issues, but the devil in these amendments is really in the details.

I accept that it will be impractical for this House to deliberate on all the details of the compensation formula or mechanism. But there are some fundamental questions we should talk about. For example, what does compensation for “loss of earnings” mean? Should compensation be restricted only to Singaporean and PR donors? Should there not be a cap on the amount of compensation? Should foreign donors and recipients be subject to different rules? How is the compensation sum to be disbursed? Other members of this House have raise many good questions.

We should debate these questions in this House, instead of giving a committee , which has not even been formed, a blank cheque to decide them.

May I also ask the Minister if his Ministry intends to take a similar light-touch approach with this committee as it does with the Hospital Ethics Committees?

A compensation regime which does not adequately address the interests of donors, or worse, encourages less than altruistic behaviour, will undermine the very amendments which we are being asked to vote on today. If the system is inadequate, and there is exploitation as a result, the failure should be ours and not laid at the door of some committee.

I hope that the Minister will clarify these matters so that we can take this important step confident that we are doing the right thing for Singapore and Singaporeans. But absent an overhaul of the approval process and clarity on the compensation scheme, I cannot support it.