EXEMPTED BUSINESS

EXEMPTED BUSINESS:

(Motion): Resolved,

That the proceedings on the business set down on the Order Paper for today be exempted at this day's sitting from the provisions of Standing Order No. 1. - [Mr Wong Kan Seng].

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HUMAN ORGAN TRANSPLANT (AMENDMENT) BILL: Debate resumed.

5.15 pm

Mr Khaw Boon Wan: Let me now discuss the Muslim issues. Muslims have not been able to benefit from HOTA as their religion requires them to also obtain the consent of their waris for organ donations. In other words, the consent of the donors alone is not sufficient. Hence, as pointed out by Mdm Halimah, section 5 of HOTA ended up excluding Muslims.

But as pointed out by the Malay MPs, Islam does not prohibit organ donation. Indeed, MUIS has clarified that it supports organ donation to save lives. The Fatwa Committee has also ruled that kidney, liver, heart and cornea donation and transplantation are permissible. But as explained by Dr Maliki, to pledge their organs, Muslims will have to do so with their waris' consent through the existing opt-in Medical (Therapy, Education and Research) Act.

The problem is that this opting-in approach has not been effective, not just with Singapore Muslims, but with any community in the world. And this is the

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reason why we and many other countries have enacted HOTA-like legislation.

As noted by Mr Ahmad Khalis, only 15,000 Muslims have pledged their kidneys under MTERA. This is about 5% of the Muslim population. This is despite years of intensive efforts by community organisations such as the National Kidney Foundation and the Muslim Kidney Action Committee. The low pledge-in rate for organ donation is similar to the experience in other countries. Moreover, as Dr Lily Neo has observed, many Muslims sign up as donors only when they find out that they have failed kidneys. So, effectively, such donors do not really contribute to the pool. As a result, very few Muslims have actually donated their kidneys. Of the 70 potential Muslim donors who have been identified since 1988, consent for organ donation was given by the waris in only six cases.

The small number of kidneys donated by Muslims has put them at a natural disadvantage. First, because those who have not opted in get lower priority. Second, because the immunologic profile of Malays tends to differ from non-Malays. So it is more difficult for a Malay to obtain a kidney of the right match from a Chinese or Indian donor.

Organ matching is affected by the genetic make-up of the person, in particular, the Human Leukocyte Antigen (HLA). The HLA type is related to the ethnic group of the person. So persons of the same ethnic group are more likely to have similar HLA type. Better HLA matching between a donor and a recipient will lead to better outcome for the recipient. And when organs are being allocated, this is a one key consideration. Organs are precious and we want the best possible matching. And with a small number of Malay kidneys available for allocation, it is not surprising that there are few Malay recipients.

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To compound the problem, Malays are at higher risks of developing kidney disease. Mdm Ho Geok Choo asked how many Malays are on the waiting list. 20% of the 700 patients on the waiting list are Malays, even though Malays make up only 14% of the total population. In other words, Malays are 50% more likely to develop end-stage renal disease than other races.

For these patients with kidney failure, the suffering is real. As Mr Zainul Abidin told us just now, at the Meet-the-People sessions, we have all heard these heart-wrenching stories. Many have to endure years of kidney dialysis while waiting for a kidney.

We should try to reduce this problem. Dr Lily Neo asked what could we do. Unfortunately, given the religious considerations, there is no easy solution. Fortunately, as pointed out by Mr Ahmad Khalis and Mr Zainul Abidin, MUIS has been regularly updating its interpretation, in the light of medical advances. I therefore share their hope that, in due course, there might be a fresh interpretation of how the consent of the waris could be expressed. Mr Ahmad Magad just now spoke about some possibility of an alternative process of giving consent. It sounds very complicated to me, but I think it is worth exploring to see how it can be done. The end objective is to see whether we could, as he put it, have an inclusive approach, so that the Muslim community could come under HOTA.

Meanwhile, for as long as we cannot overcome the religious requirement, the Muslim community will have to make an extra effort. What are they? First, to prevent organ failure through healthy lifestyle and careful disease management. So, please join me in all my marathon runs. Second, to promote organ

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pledging. My Ministry will work with the Muslim community to encourage more to pledge to donate their organs. But, honestly speaking, we have already tried this for many years, with so little effect. So, I share Mr Zainul's pessimism.

One solution is to encourage living donors, like in Norway. In this way, we can meet the waris and religious requirements. The regulation of living donor organ transplantation under HOTA will apply to Muslims. Another way, of course, is what Mr Ahmad Magad talked about just now - be creative to see how the process of waris' consent can be managed. But this is something for the Muslim community to think through and discuss. I support Mdm Halimah's call for the Muslim scholars, MUIS, the Fatwa Committee and for international religious scholars to press on with these discussions to see how the constraint of section 5 can be overcome. My Ministry will provide the appropriate support. If they need me to speak in the mosques and so on, I will be most happy to do so.

Let me now address some of the operational issues related to this Bill.

Some Members commented about Singaporeans who may not want to donate all the four organs, maybe only one or two. Yes, the Bill allows for selective opting out. So you can say, "I opt out of cornea but I opt in for the rest."

Mdm Cynthia Phua had two queries. One is when a person opts out of an organ but not the others, what about the penalty? The two-year penalty only applies to the specific organ which is being opted out, but not to the others. I think that is fair. She quoted a strange case of somebody who opted out of HOTA but opted in through the opt-in scheme. I do not know whether there are such persons. I am not a lawyer. I suppose when you have two different

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decisions which contradict, the most recent decision applies.

Mr Gan Kim Yong asked how one could go about opting out. It is actually quite simple. These forms are available at hospitals, outpatient clinics, and they can also be downloaded from the Ministry of Health's website.

Mr Gan Kim Yong, Mr Zainul and many others rightly pointed out that we should fully inform Singaporeans about HOTA and what they should do if they wish to opt out. After the Bill is passed, we will carry out a six-month public education campaign to inform everybody. We will be sending out information brochures to all households for this purpose. I take Mr Ong Ah Heng's point about printing brochures in four languages.

Moreover, as pointed out by Dr Amy Khor, this should be a continuous sustained effort, as there would be new citizens, new PRs, and new Singaporeans who turn 21. Dr Khor made the helpful suggestion that we organise annual awareness activities to inform and educate Singaporeans on organ donation, on HOTA and organ pledging. This we will do.

On Singaporeans turning 21, we do send out letters containing HOTA and opt out forms in four languages to every such individual. We batch this, not every day. We do it twice a year. My eldest daughter just turned 21 a few months ago. I notice that she did receive a parcel by registered mail.

Recently, I did a welcome reception for new citizens and new PRs in my constituency. So, I did a casual check with them about HOTA and they do know about HOTA. In fact, at the reception itself, my grassroots leaders did some presentation to them about Town Council, community centres, how to join the

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activities, and HOTA was one of the topics in the presentation. But no amount of public education would reach every single Singaporean, but we should always do our best.

Mr Gan is worried about the elderly who are illiterate. We will try to reach out to them too.

Mr Ong Ah Heng called on older Singaporeans to change their mindset about organ transplantaion, brain death and so on. Actually, I think many senior citizens are supportive of HOTA and the amendments. But I agree that we have a duty to help educate the sceptics and provide them with the right information.

Dr Ong Seh Hong asked if families of the dead would be able to perform the last rites before the organs are removed. Yes, they can.

I also totally agree with Dr Lily Neo and Mr Ong Ah Heng that public education should stress the preventive aspects; in other words, to prevent the organ from failing by adopting a healthy lifestyle.

Dr Lily Neo proposed two drafting amendments. First, she proposed that section 5(2)(f) be amended to provide for the consent of the committee of the estate to be obtained for the removal of an organ from a mentally disordered person who has died. This is an existing section. It was included in the original Act to exclude HOTA from persons of unsound mind, unless the parent or guardian has given consent.

Dr Neo would like to empower the committee of the estate to provide consent for removal of organs under HOTA. A committee of the estate is appointed by a court under the Mental Disorders and Treatment Act for a particular purpose, and that purpose does

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not include medical decisions on treatment or related matters. So, I am afraid Dr Neo's proposed amendment is not doable. In any case, the current provision of leaving that decision to the parent or guardian, in my view, is sufficient.

Second, Dr Neo suggested that HOTA be amended to state that the information recorded in the objector register shall be final and conclusive. This is indeed the policy intent. I have checked with the Attorney-General's Chambers and they confirmed that this is indeed the legal position of the current Act.

Mr Ang Mong Seng asked if organ pledgers and non-HOTA objectors are subject to higher insurance premiums and whether they will lose the medical coverage. There is no basis for insurers to discriminate against organ pledgers and regard them as having higher health risks. Indeed, I am not aware of any insurance policy where insurance premiums are dependent on organ donation status.

Mr Ang Mong Seng also asked why there were different age limits for different organs. No, there is no such difference. HOTA has one common age limit of 60 at the upper end, and is not organ specific. On the other hand, Mr Iswaran noted the different age thresholds for the young - 18 for opt in and 21 for opt out. This is true. I suppose the reason is that for HOTA, we have deliberately made it more restrictive and hence limit it to adults above 21. However, for opt in, where a conscious decision has to be taken, we have lowered the age threshold. Young people now mature quite fast. It is increasingly difficult to set a good age of consent. That is why for the live-donor portion of HOTA, we have decided not to hard-wire in the age threshold, but to allow the

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ethics committee to make a decision on a case-by-case basis.

Some Members talked about our low organ pledging rate, and this is true. This is despite many years of work. I suppose part of the reason is that people do not want to talk about death, but death is one constant in life. We are not immortal. We all have to face death one day. I think it is far better that we prepare for death while we are still alert, rational and healthy, than to let our loved ones scramble in desperation at a time of sudden shock and grief.

Members may remember the case of a woman in Florida last year who has been in a persistent vegetative state for more than 10 years. She is alive. She can breathe. However, she is unable to take in food or water on her own. But if she is fed through a tube, she will live; if not, she will die within a week or two. The doctors have to insert a tube into her stomach to feed her. Because this is an invasive procedure, consent is needed. Since she is in a vegetative state, someone has to act for her.

Herein lies the difficulty.

Her husband felt that she would not have consented, but her parents felt that she would. There were lengthy court proceedings over the years. The feeding tube was inserted, removed and then re-inserted as the court proceedings progressed. What a life! And what trauma it brings to the loved ones!

In the hospital ICU, when a brain death occurs, we often face the anguish and moral dilemma of relatives. Many are not sure what their loved ones would have decided: would he or she have wanted to donate the organs to save lives or would they have preferred not to? If the person has clearly indicated his decision, either by actively opting in or by actively opting out, the relatives would be saved the anguish, especially at a time of

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sudden loss.

Is it not better that we register this clear decision when we are able to, instead of leaving our loved ones to speculate? It will only take a few minutes. 50,000 Singaporeans have made this clear decision. Anecdotally, I know that several Members in this House have done so and pledged all their organs.

Dr Neo asked if we have tried our best to get more to pledge. I am sure more can be done, and I will. But the global experience is not optimistic. There is an organ shortage everywhere, even in the most civic-minded society.

HOTA is not a perfect solution but a practical approach to a real serious problem. It should not be a substitute for organ pledging, but both can co-exist. That is why we will continue to promote organ pledging. And we will work with all and sundry - religious bodies, professional and community organisations, and so on.

As I said, we are not alone in having low organ pledge rates. In the United Kingdom and the United States, despite many years of promotion, they are equally short of organs. That is why more than 20 countries have enacted HOTA-like legislation. In the US, at least 13 states (including California and Texas) have begun to enact laws which provide for presumed consent, starting with cornea.

But meanwhile, the gap between organ supply and demand continues to widen. So not surprisingly, we begin to read about radical ideas of paying for organs to save lives.

Like Mdm Ho Geok Choo, I have read about the suggestion in Britain of creating "an ethical market in live donor organs and tissue". Maybe I am conservative, but I find "an ethical market for organs" a contradiction in terms.

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I read in the Boston Globe another article saying that altruism alone will not be enough to meet the need for organs. While the author was against trading of organs by live donors, it advocated the trading of organs from the dead. What do Members think? What do Singaporeans think? These are complex ethical issues which we may have to confront one of these days.

Meanwhile, I belong to the old school which believes that all organ donations must be altruistic in nature. We will not allow any financial incentives to be given. However, I see nothing wrong in meaningful gestures to recognise generous acts of altruism. For example, some limited waivers of hospital charges are currently provided to the immediate family members. However, I would be reluctant to hard-wire these financial gestures into the Act, as it seems to be proposed by Mdm Ho.

Mrs Lim asked if recipients would be allowed to reimburse lost earnings of donors. Such an intention should be made known and considered by the Transplant Ethics Committee. If the committee assesses that this does not amount to organ trading, then it can be allowed.

Finally, let me respond to comments on how organs are allocated to those on the waiting list. Mdm Ho noted that in the US, elaborate contra-indications of who should get priority and who should not are developed and made public. We have a Committee headed by Prof. Goh Lee Gan to prioritise and make such decisions in a rational, scientific, equitable and unpoliticised manner. There are three main considerations.

First, we want the best possible matching of tissue type to ensure the most optimal outcome. It would be a great pity if a transplanted organ ends up being rejected. So medical criteria,

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particularly tissue type compatibility, are important considerations. As a result, our transplant success rate is comparable, perhaps even better, to the best centres in the world. In Singapore, 90% of renal transplant patients have grafted kidneys that are still functioning after one year. 75% are still functioning after 10 years. Our 10-year graft survival results of 75% are significantly better than the US figure of 50%. Credit must be given to the Committee's careful patient selection.

Second, HOTA non-objectors and Muslim pledgers should have priority over HOTA-objectors and Muslim non-pledgers. I think this is fair. This has been enshrined in HOTA since the very beginning.

Third, those who have been on the waiting list longer will have priority over those with shorter waiting time.

Socio-economic factors are not taken into consideration. We do not discriminate between rich or poor; politicians or non-politicians; skilled or unskilled; employed or unemployed; male or female. Age is however a consideration as this is closely linked to medical suitability and outcome of the transplant.

This set of selection criteria is formulated by Prof. Goh Lee Gan's Committee. It is made known to the transplant community. There is nothing secretive about it.

Is it useful to publish it? I am not sure how useful it is to the layman. I myself have tried to decipher the various technical details. After spending some time on it, I found myself completely lost in the jungle of alphabets like HLA-A, HLA-B, HLA-DR, SGPT. I decided that I should stick to my core competence and

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not try to play doctor.

Mdm Deputy Speaker, I think I have responded to all the comments made by the Members. I am sorry for taking a long time on this because I deliberately want to address all the points made by the Members on this very important topic. I am grateful for your patience, and I am grateful for the Members' strong support. Despite the sensitivity of the topic, Members have been able to give the Bill their support.

Brain death and possible abuses were some of the important issues raised. These are legitimate concerns and we will ensure that when these policies are implemented, there will be continued emphasis on safeguards and strict ethical standards.

As Dr Chong Weng Chiew puts it, the support shown by most Singaporeans for this Bill is evident - that they trust our healthcare system; they trust our doctors. This is a trust earned through the decades. We must not do anything to weaken or, worse, abuse that trust.

Mdm Deputy Speaker: Order. Mr Khaw, your one hour is up.

Mr Khaw Boon Wan: Thank you.

Dr Lily Neo (Jalan Besar): May I seek three clarifications, Mdm Deputy Speaker?

May I seek clarification on sections 9 to 13 with regard to several forms that may cause confusion and perceived discrepancy? The Minister said earlier that finality of decision is based on what is recorded in the register, and that is indeed the policy intent. May I ask the Minister why should it remain only as a policy intent? Would it not be better to make this amendment at this Second Reading to express this policy intent so as not to give rise to uncertainty or

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discrepancy in the future in respect of this issue of finality? Why can we not take this opportunity to have this final issue resolved once and for all?

My second clarification is on section 5(2)(f) on my suggestion to also include consent to be sought from the committee of the estate, if any. The Minister replied that this is not possible as the committee is set up under the Mental Disorders and Treatment Act. My question to the Minister is whether the reason why a committee is appointed, instead of the parent or guardian, clearly indicates that the committee is in a better position to make the decision. If it is the intent under the Mental Disorders and Treatment Act that the committee be in charge of the affairs of that person, surely the intent ought to be applicable under HOTA. May I also ask, since the courts are of the view that the committee is a suitable party managing the affairs of the person of unsound mind as compared to the parent or guardian, this must surely apply to HOTA as well.

My last clarification. The Minister earlier asked who would behave like opting out of HOTA but opting in for MTERA, as the question posed by Mdm Cynthia Phua. May I ask the Minister whether such a person will be the one, due to principles, who prefers the personal choice of opting in under MTERA rather than under the compulsion under HOTA? Therefore, would such a person be penalised for doing so?

Mr Khaw Boon Wan: On finality, it is more than policy intent. I have checked with the Attorney-General's Chambers. They were quite clear that the various sections (9, 10 and 11), as currently drafted, make it clear that whatever information is in the objector register is the final position, irregardless of all the paper work that may have been changed over time. So it is more than policy intent. It is my policy intent, and it is

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already the legal position. I am not a lawyer. I stand advised by AG's Chambers.

The second point is about mental disorder. Although I was long ago in the Ministry of Health, I could not quite recall this Mental Disorders and Treatment Act, what prompted the setting up of this committee of estate, what was the thinking behind that, which I could check. But whatever it is, the legal position is that committee has limited functions, and the functions are spelt out in the Mental Disorders and Treatment Act. And that function does not go into issues like giving consent on giving away the organs. So, it is completely and legally untenable to accept the Member's amendment. In any case, my position is, as a policy, leaving it to the parent and guardian for a decision like this is good enough.

On the last point about a Singaporean who opts out of HOTA and opts in, and who will be such a person, I do not want to speculate on what is the reason why the person decides to opt in and opt out. But whatever it is, that is his or her personal choice. Again, as I said just now, I am a non-lawyer. I just assume that the latest decision should apply, if the two decisions were to contradict. But I could be wrong, I do not know.

Question put, and agreed to.

Bill accordingly read a Second time and committed to a Committee of the whole House.

The House immediately resolved itself into a Committee on the Bill. - [Mr Khaw Boon Boon].

Bill considered in Committee.

[Mdm Deputy Speaker in the Chair]

The Chairman: The citation year "2003" will be changed to "2004" as indicated in the Order Paper Supplement.

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Clauses 1 to 11 inclusive ordered to stand part of the Bill.

Bill reported without amendment, read a Third time and passed.