NATIONAL REGISTRY OF DISEASES BILL

NATIONAL REGISTRY OF DISEASES BILL: Order for Second Reading read.

3.19 pm

The Minister for Health (Mr Khaw Boon Wan): Sir, I beg to move, "That the Bill be now read a Second time."

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Introduction

Rational healthcare policies are underpinned by accurate and timely information. For example, should we promote regular breast screening among Singaporean women? If so, for which age groups and at what frequency? Settling such policies requires robust analysis of cost-effectiveness and survival data, without which our decisions will be merely arbitrary or based on data drawn from other countries which may or may not apply to Singaporeans. Good information is especially critical when we have to deal with diseases such as cancer, heart disease, stroke and kidney failure that are major causes of death and morbidity among Singaporeans.

There are many ways to collect such information. We do so through periodic surveys but such data can only provide a snapshot of the prevailing situation at a particular point in time. We need to supplement this with continuous time-series data which tracks the incidence and the outcomes of the disease in the population. A well established method for gathering such information is through setting up a national disease registry.

With time-series data collected by the registry, we can answer many critical health policy questions, for example:

(i) What is the number of new cases of a disease every year - is it rising or falling? Do we need to adjust the type of health services to meet this changing trend?

(ii) Is the disease affecting a particular segment of the population more than the others - how can we better target our prevention and treatment programmes?

(iii) How do people suffering from the chronic disease fare? How long do they

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survive and how do we compare with other countries?

(iv) Have prevention and treatment programmes made a difference?

Disease Registries

In 1968, we set up our first disease registry, which was the Singapore Cancer Registry. So this was almost 40 years ago. This was followed by the Heart Registry in 1988 and the Renal Registry in 1993. Currently, the Stroke Registry is being piloted in some public hospitals. These four registries make up our National Registry of Diseases.

A good national registry must meet two criteria. First, it must be comprehensive, ie, it should cover all cases or almost all cases in the country. If a Registry misses out a significant segment of the population, this may result in under or over reporting of disease burden.

Second, the registry must be well maintained with close tracking of how the disease progresses over time. This requires the submission of individualised information, so that new data can be matched with existing data in the registry, thus avoiding any double-counting.

Our current disease registries suffer a major limitation because it is based on voluntary reporting. While public hospitals have been forthcoming in reporting, many private hospitals have largely not taken part. As a result, our registries are incomplete. A major concern of the healthcare providers is the lack of clarity on the legal basis for the disclosure of individualised information to disease registries, whether they will be breaching medical confidentiality.

Legislation

Formal attempts at registering diseases date back to 1728, the year of

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London's first General Census of Cancer. This was followed by attempts in the Netherlands, Spain, Portugal, Sweden, Hungary, among other countries. Most of these attempts failed due to incompleteness of data, as the reporting was voluntary. The breakthrough came from the United States where a regulation was enacted in 1939, requiring reporting of all cancer cases diagnosed in New York State. Since then, the US has made cancer reporting mandatory in most of its states. Similar laws have been passed over the last 50 years in Canada, Australia, New Zealand, Denmark, Norway, Finland and Germany, just to name a few. We have studied their legislation and drawn on relevant features when drafting our own Bill.

The National Registry of Diseases Bill makes it mandatory for healthcare institutions to submit relevant epidemiological data to the National Registry of Diseases for public policy and planning purposes. The Bill also commits MOH to responsible stewardship in the storage and disclosure of registry data by ensuring that patient confidentiality is observed by all persons who maintain and use the data. The Registry is already subject to stringent governance standards in securing the information collected and protecting patient confidentiality. The Bill articulates these practices and provides for powers of enforcement.

Objectives

The Bill aims to achieve four objectives:

One: Comprehensive coverage

The Bill makes it mandatory for the manager of a healthcare institution to notify the Registry when a person is diagnosed with or undergoes treatment for a reportable disease listed in the

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Schedule to the Bill. The types of cases that have to be reported will be further specified in subsidiary legislation. The Bill also empowers the Registry to collect information about notified cases from the relevant medical records. The kind of information that may be obtained will be set out clearly in subsidiary legislation. Patient consent is not required.

Cancer will be the first reportable disease to be listed in the Schedule as the current cancer registry is well established with clearly defined work processes. MOH will add further diseases to the Schedule only if the collection of such information is essential to support national policies. Communicable diseases will not be covered under this Bill, as there are already provisions under the Infectious Diseases Act to obtain information on such diseases for the purpose of disease prevention and control.

Two: Basic data requirements

Collection of detailed information for every case of a disease will be tedious and expensive. We will therefore only collect data that is essential for public health planning. This will vary for different reportable diseases and the type of information collected will be set out clearly in subsidiary legislation. Any change to the list of information that can be collected will require Ministerial approval and will be published in the Government Gazette .

While it may be tempting to try and collect as much information as possible to anticipate future policy needs, this is neither feasible nor desirable. Excess data reporting imposes a heavy burden on healthcare institutions. Neither is it efficient nor cost-effective for the Ministry. We also need to respect the privileged access that this Bill provides to patients' medical records. We are sensitive to the fact that healthcare policy questions may change over time, but, instead of

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collecting a lot of information in anticipation, we will review and make some changes to the data collected by the Registry from time to time.

To make compliance as painless as possible, the Registry will work with healthcare institutions to facilitate convenient reporting. This includes batch reporting by linkages with hospital information systems, online reporting through the Internet, or submission of simple paper forms. As we are dealing with chronic diseases, instantaneous real-time reporting is not required and a reasonable grace period will be provided.

Three: Patient privacy and data security

In addition to administrative safeguards, such as clearly defined operating procedures with strict access controls to the Registry, encryption of data and regular audits, which are already in place, the Bill imposes a very strict obligation on all officers and agents of the Registry to protect confidential data. Similarly, those persons who request for and receive Registry data are bound to observe conditions of confidentiality set by the Registry. Any person, including a registry officer or agent, who discloses individually-identifiable information from the Registry in breach of the Bill faces imprisonment of up to 12 months, or a fine of up to $10,000, or both.

Four: Purposes of disclosure

The Bill clearly lays down the rules as to whom, and for what purpose, and in what form, the information can be released. In addition to its primary use by MOH for healthcare policy planning, we anticipate that the public, doctors, academics and researchers will want to know some key statistics about the chronic diseases. The Registry Office will therefore publish reports of analysed data in simplified form on a regular basis.

Such

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reports will be made publicly-available. The Registrar of the National Registry of Diseases is also empowered to release de-identified data for research of significant public health importance that has undergone rigorous scientific, ethical and regulatory scrutiny.

Identifiable patient information may be disclosed under the Bill for the purposes of national public health programmes. Such disclosure will need the approval of the Director of Medical Services (DMS). In deciding whether to give his approval, the Director of Medical Services will, amongst other things, consider the aims and objectives of the proposed programme, and whether it has any public health benefits to Singapore. He must be satisfied that the programme cannot be carried out using anonymised data. In addition, the Director of Medical Services must also be convinced that adequate measures will be put in place to protect the individually-identifiable information from unauthorised disclosure.

The Bill permits identifiable patient information to be disclosed for the purposes of medical treatment or for public health research. This will only take place if the person to whom the identifiable information relates has given the requisite consent. NRD data will not be released for other purposes, for instance, to employers or insurance companies.

Main features of Bill

Let me now run through the main features of the Bill.

Clause 2 of the Bill defines reportable diseases as those listed in the Schedule. Cancer will be the first reportable disease.

Part II of the Bill establishes the National Registry of Diseases and sets out its functions. These include the collection of information on reportable diseases,

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establishment of registers, compilation and publication of statistics, and the provision of information for supporting health services and national public health policies. Clause 3 sets out the various categories of officers that may be appointed to run the Registry.

Clause 6, in Part III of the Bill, makes the notification of reportable diseases mandatory for managers of all healthcare institutions. The burden is placed on the manager as he has the management and control of the institution. Very limited data will be required to make a notification. Clause 7 empowers registry officers or agents to follow up on the notification to extract patient data from the relevant medical records. The kind of information that can be obtained will be predetermined, and will be listed clearly in subsidiary legislation.

Part IV addresses the issues of confidentiality and disclosure of Registry information. It imposes stringent obligations on registry officers and all other persons who request and receive Registry data. Unauthorised disclosure of identifiable personal information stored in the Registry is punishable with a jail term or a fine, or both.

Clause 9 allows the Registrar to release anonymised information to any person on request, and to charge a fee and set conditions that have to be met. Clause 10 provides for the release of identifiable personal information for the conduct of national public health programmes, while clause 12 provides for the release of identifiable data for the purposes of public health research but only if the requisite patient consent has been obtained. Clause 11 allows patients to authorise their doctors to retrieve their Registry data if this is necessary for their proper treatment.

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Clause 13 in Part V of the Bill provides for the appointment of investigation officers. Clauses 14 and 15 clothe these officers with enforcement powers that will allow them to investigate offences committed under this Bill.

Part VI deals with a host of miscellaneous matters. Clause 17(2) is noteworthy as it clarifies that a person who makes a notification to the Registry or who makes available to the Registry any document or information for the purposes of complying with the Bill will not incur liability for breach of confidence or of professional ethics.

Implementation plan

Reportable diseases

To facilitate the smooth implementation of this Bill and to allow healthcare institutions to ease into this new reporting framework, only cancer will be listed as a reportable disease for now. The other three national-level disease registries maintained by the NRD for stroke, heart and renal disease will be reviewed for possible inclusion over the next two years. Listing of additional reportable diseases will depend on epidemiological and public health needs.

Feedback and consultation

Extensive public consultations were held with doctors, healthcare administrators, ethicists and regulatory bodies, and researchers. There was general support for the Bill, and points of concerns have been addressed in the draft Bill.

Conclusion

The National Registry of Diseases Bill, and the Registry that it will create, will play a vital role in our public health efforts. It provides for the compilation of important information on non-communi

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cable diseases that will guide policymaking on national healthcare and the formulation of public health programmes. It will provide greater clarity on the type of health information which can be collected at national level and spells out the purpose for, and the form in which it may be put to use.

I ask all Members of this House to support this Bill.

Sir, I beg to move.

Question proposed.

3.37 pm

Mdm Halimah Yacob: Mr Speaker, Sir, I rise in support of this Bill.

I agree with the Minister that to develop rational healthcare policies requires accurate and timely information. This Bill seeks to do just that through the establishment of a National Registry of Diseases, which will help in gathering information in a systematic and continuous manner by requiring all reportable diseases to be registered. In this manner, the Registry will contribute towards the formulation of robust healthcare policies, promote research on major diseases as well as further enhance the delivery of medical treatment to patients. For these reasons, this Bill is timely and will help to develop and improve the quality of Singapore's healthcare services.

However, Sir, I have one major concern as well as several clarifications to seek from the Minister. The Bill provides extensive powers for the Registrar of the National Registry of Diseases (NRD) to collect information and to have access to patients' data. Therefore, protecting patient confidentiality is very crucial to ensure credibility in the system and to win patients' trust. I note that the Minister has dwelt at length on this, citing a number of measures to protect patient confiden-

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tiality, including the imposition of jail terms and fines for those caught breaching it, which is necessary as we do not want to see a repeat of the Shovron case where there was a clear breach of patient confidentiality.

I would like to ask the Minister to consider further tightening some of the provisions to ensure greater protection of patient confidentiality. The Bill provides for the use of anonymised information where the identity of the individual is concealed or protected. I have no major worries with regard to the use of anonymised information, as there are no serious confidentiality issues involved. My concern is more with the laxity allowed in the use of "individually-identifiable" information, where the identity of the individual can be readily discovered or ascertained from the information given. The use of "individually-identifiable" information is provided under clauses 10, 11 and 12 of the Bill.

First, let me touch on clause 10. Under clause 10, the Registrar of the NRD may, with the approval of the Director of Medical Services, disclose "individually-identifiable" information to "any public officer or any other person" for the purpose of conducting national public health programmes concerning any reportable disease. I notice that unlike clauses 11 and 12, it is not necessary to get the consent of the patient before such information is released to the public officer or any person, which is a matter of concern. Could the Minister clarify, other than the public officer, who else can have access to the "individually-identifiable" information; in other words, who are covered under the ambit of "other person" stipulated under clause 10? I would like to suggest that to ensure greater transparency, the Ministry draws up a list of who will be included under the list of "other person", so that patients are clear as to the people who have access to their individual medical records.

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I would also like to seek a clarification whether, under clause 10, the identities of patients suffering from the reportable diseases can be made known to the public when the national public health programmes are conducted. If so, this could cause embarrassment and discomfort to patients whose identities are made known to the public, especially if their consent is not even required under clause 10. Hence, disclosure of such "individually-identified" information to the public should not be allowed or, at most, allowed only in the most exceptional cases such as when we have a SARS-like situation.

Again, on clause 10, I would like to suggest that the Minister consider making it compulsory for the consent of the patient to be obtained before any "individually-identifiable" information held by the NRD can be disclosed for the purposes of the national public health programmes. Clauses 11 and 12 already make it compulsory for such consent to be secured before "individually-identifiable" information is disclosed to a patient's doctor for his treatment or disclosed for research purposes. I do not see any reason why a similar requirement for consent cannot be imposed under clause 10 before the medical records of individuals with their identities revealed are made available for carrying out national public health programmes. Surely, under clause 11, it is necessary to get the consent of the patient before his record is revealed to his own doctor for medical treatment. I do not see why his consent is not required under clause 10 for national public health programmes.

Sir, m y second point is with regard to the disclosure of "individually-identifiable" information for public health research. I understand that such information will be

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released for research purposes, only if the research will help to improve the quality of health services provided for patients suffering from any reportable diseases; or to support any national public health policy initiative or programme. However, I feel that it should be made compulsory for all research applications to be referred to the National Research Advisory Committee to better protect patient confidentiality by ensuring that it is the whole committee, and not just the Registrar of the NRD, who will decide whether researchers will have access to patients' data and identity. Clause 12(5) in the current Bill leaves it to the Registrar to decide whether or not to refer an application by a researcher for the release of "individually-identifiable" information to the National Research Advisory Committee, which, in my view, is very weak, as it seems to give an inordinate amount of power to the Registrar.

My third point is on clause 2 of the Bill, which defines the meaning of "requisite consent", for the purposes of section 11 or 12 of the Act. This is a very important part of the Bill but, unfortunately, it is rather scanty. I would like to urge the Ministry to draw up clear guidelines on how to secure consent from patients as, considering the gravity of the diseases covered under the Bill, patients may not always be in a clear frame of mind to make informed decisions without proper guidance. For example, the guidelines could provide that before patients' consent is obtained, they should be clearly informed that they have a choice on whether or not to disclose their personal information. The hospitals, clinics or laboratories should also make sure that patients understand the implications of their choice. For example, if they choose not to reveal the information to the doctors treating them, the lack of information may affect the effectiveness of their treatment. The hospitals, clinics or laboratories should

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also respect the rights of patients and facilitate them in exercising their right. As this is something new, hospitals, clinics and laboratories should also have information leaflets on patient confidentiality and information disclosure and ensure that these have been read and understood by the patients. The UK's National Health Service has a comprehensive code of practice on patient confidentiality, which can be a source of reference for drawing up our own code and guideline.

My final point is to seek clarification on clause 2 of the Bill on the definition of "healthcare institution". I notice that this whole Bill excludes the public sector healthcare institutions. I would like to ask the Minister whether there is any other law that covers patient confidentiality in public sector hospitals, polyclinics or laboratories. The Minister had mentioned that public sector institutions are already providing such information voluntarily but nothing was mentioned about what laws govern the use of "individually-identifiable" information for patients in the public sector. So the question is, what laws apply and how is patient confidentiality protected in the public sector, as the issues governing patient confidentiality apply equally to both the public and private hospitals and therefore there should be a common set of rules that applies to both. The Minister's clarification on this point would be most helpful.

On this note, Sir, I support the Bill.

Mr Speaker: Order. I propose to take the break now. I suspend the Sitting and will take the Chair again at 4.05 pm .

Sitting accordingly suspended

at 3.45 pm until 4.05 pm.

Sitting resumed at 4.05 pm

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[

Mr Speaker in the Chair: ]

NATIONAL REGISTRY OF DISEASES BILL: Debate resumed.

Dr Lam Pin Min (Ang Mo Kio): Mr Speaker, Sir, I rise in support of the National Registry of Diseases Bill.

The healthcare services in Singapore have a reputation of being world-class, reliable and efficient. The combination of excellent healthcare infrastructure, availability of skilled medical professionals and the latest medical technology has made Singapore the convincing healthcare services hub in the region.

However, in order for Singaporeans to benefit from the excellent medical services available, rational and well-thought through healthcare policies are necessary, and I fully agree with the Minister's comment that good healthcare policies are underpinned by accurate and timely information.

There are currently a few disease registries for the common medical conditions, such as cancer, heart disease, renal disease and, most recently, stroke. Unfortunately, there is currently no law to make the reporting of these diseases mandatory and, as such, the data collected is largely from the public healthcare institutions, which submit it on a voluntary basis. This has inevitably resulted in incomplete collection of data with limited usefulness for national level policy planning and research. In fact, inaccurate or incomplete information may in turn give false correlations and become useless for research and disease prevention.

The introduction of the National Registry of Diseases Bill is therefore important for the following reasons:

(1) The information collected will provide significant contributions to efforts to find causes of diseases;

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(2) It is the most accurate way to determine the number of people with a particular disease and to identify trends in disease rates;

(3) It can determine whether demographic factors, such as race, ethnicity, gender, age and place of residence, influence the likelihood of developing the disease;

(4) It provides systematic ways to link diseases to environmental risk factors, by linking with environmental health databases; and, lastly, and most importantly,

(5) The identification of factors causing the disease is the first step towards the prevention of the disease.

The Singapore Cancer Registry was the first to be set up in 1968. With its well-established processes, it is therefore natural and understandable to make cancer the first reportable disease to be included in the Schedule. Cancer is the leading cause of death in Singapore. It accounts for 28.5% of total deaths in 2006, with ischemic heart disease tailing behind at 18.5%. In order to position Singapore as the centre for cancer research, the Singapore Cancer Syndicate was formed to enhance cancer research and to bring it to the next higher plane. The data collected under this new Act would definitely go a long way to bolster the efforts in enhancing cancer research in Singapore.

However, I would like to seek clarification from the Minister if the definition of cancer in the Schedule encompasses only malignant tumours. Will there be exclusions, for example, for selected skin cancers, namely, basal and squamous cell carcinoma of the skin? In certain countries, these cancers are exempted from reporting, as they are rarely fatal and usually do not require hospitalisation. In addition, I would also

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like to ask the Minister if benign tumours with the potential to cause fatality, such as meningioma of the brain and nervous system, be considered in the definition of cancer in the Schedule?

The Bill is certainly designed with the intent to expand the scope of reportable diseases in the future. The inclusion of other common diseases that afflict Singaporeans, such as stroke, diabetes mellitus, heart and renal diseases, into the Schedule will be useful, and I urge the Ministry to seriously consider doing this sooner than later. This would enable relevant medical information to be collected, analysed and researched to support formulation of effective public health policies on possible prevention and control of these common diseases.

In the process of reporting and data collection, the issue of patient confidentiality is an important one. Well-trained staff and strict procedures must be put in place to protect patients' privacy and medical confidentiality. The data in the Registry must not be released to any other parties, such as employers and insurance companies, without the prior consent of the patient. The use of International Classification of Disease (ICD) codes in the reporting should be considered as it provides, to a certain extent, a "masking effect" on the disease conditions to untrained personnel.

In order to enhance compliance and to minimise inconvenience to the healthcare institutions and medical practitioners, I am glad to know that the Ministry is considering different modes of submissions, either electronically or paper reports. The entire process should also be made simple and seamless. This is especially imperative for solo medical practitioners who do not have the luxury of manpower to submit the reports.

Sir, in the area of mandatory registering of diseases, many countries, such

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as the United States, Canada, Australia and New Zealand, had done more and are way ahead of Singapore. The introduction of the National Registry of Diseases Bill is, therefore, timely and would aid the Ministry in the formulation of sound healthcare policies and public health programmes that would benefit Singaporeans.

On that note, Sir, I support the Bill.

4.12 pm

Mr Sam Tan Chin Siong (Tanjong Pagar): Mr Speaker, Sir, I have three brief points to make on the Bill.

My first point is that the National Registry of Diseases opens a fear that is natural to anything that requires us to declare our own deepest and most private secrets. Who in this House is prepared to make public the operations that he has had over the years, the medications that he takes for chronic conditions, and the infectious illness he or she may harbour?

Yet, with the National Registry, we might all have to do it one day, sooner than later. True, there are safeguards in the Bill. True, this is a move which other countries have adopted. But this does not mean that the people are not worried.

Privacy of medical information

I have read of the two-step method to render our individual identities into anonymous digits. But I have also read that "Identifiable data will be released if deemed necessary in cases like national public health programmes, with approval from the Director of Medical Services." Mdm Halimah Yacob, Chairman, GPC for Health, has earlier expressed a concern on this matter. I, too, have the same concern.

What are some examples of these national public health programmes? How

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often do we expect them to occur? What details will the information contain? For example, Mr ABC's blood pressure is 88/130. His cholesterol level is 120 and he has a family history of diabetes, and so on. Will it be as detailed as that?

Sir, this concern is not unfounded. I was told that the American "Health Privacy Project" has data showing that one in five are victims of improper disclosure. These are worrying figures that the Bill or the Ministry has to address and prevent.

Benefit to patient

Now to my second point. The Ministry has said that it will have to rely on the Registry to effectively contain and manage diseases nationally. The Registry is also expected to become a valuable source of clinical, diagnostic and outcome data to practitioners and researchers. This sounds good but all rather vague. I would like the Minister to enlighten us on a few points.

First, to tell us if he can, the expected benefits, such as the following:

(1) Would this mean cheaper healthcare?

(2) Would this mean better planning so that our doctors can be deployed more efficiently?

(3) Or is it so that our financial projections for national healthcare expenditure can be closer to the mark?

How precisely are we patients supposed to be benefiting from this Registry?

The confessional in the clinic

Sir, my last point is on the relationship that we have with our doctors. Given the

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fact that doctors now have to declare whatever they know about us to a National Registry, is there a chance that some of us may hold back what we already know and we do not tell our doctors everything because we cannot trust that they would not "leak" it to the Government? This, of course, is an unwarranted worry in any event but, in times of stress, people do not always think and act rationally.

Sir, my idea is to strengthen the trust and relationship between patients and doctors. We ought to tell patients to continue to trust their doctors and be completely honest with them. We should also stress to doctors on how to explain the privacy protections to their patients. We must do this so that this new initiative does not intrude into the atmosphere of trust and honesty in the consultation room between the doctor and the patients.

Sir, on this note, I support the Bill.

4.16 pm

Prof. Thio Li-ann (Nominated Member): Sir, the Government takes a multi-pronged approach towards public health and disease management. Whilst existing laws like the Infectious Disease Act relate to communicable diseases, the National Registry of Diseases Bill before us today relates only to non-communicable diseases. These account for more than 60% of deaths in Singapore and draw heavily from the national coffers in terms of health expenditure.

The Bill seeks to establish a Registry of Diseases and also sets up an administrative framework which deals with the powers, duties and liabilities of the various actors involved. It seeks to regulate information flows. It requires that the Registrar be notified of reportable diseases. It outlines to whom, in what

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form and for which purposes such information may be supplied to other parties. It seeks to facilitate data collection while providing safeguards to protect the interests of patients in data security. It also imposes penalties in the form of fines and imprisonment to defer breaches of various newly created statutory duties.

The purposes of this Registry are set out in clause 4. Broadly, these relate to the collection and collation of information on "reportable diseases" with a view to publishing relevant statistics as well as the supply of this information to serve two purposes. First, to support health services provided by healthcare institutions to patients suffering from such diseases. Second, to support national public health policies and programmes as well as "related studies" or research into such diseases.

The cornerstone of sound public health policies is a comprehensive informational base on the incidence of reported diseases which bear national significance, such as cancer, which is the first disease listed in the Schedule.

From voluntary to mandatory reporting regime

The National Registry of Diseases Bill is designed to contribute to this. It seeks to formalise or place on a legal basis the existing practice where healthcare institutions voluntarily report certain diseases to the Ministry of Health, or MOH, as a matter of goodwill.

Good practice becomes law under clause 6, which imposes a mandatory legal duty on managers of healthcare institutions in both the public and private sector to notify the Registrar of reportable diseases. They are to fill out a prescribed form and to submit it within a stipulated time, presumably to be set out under

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subsidiary legislation, as clause 23(2)(e) of the Bill provides. This information will be given to the Registrar without need for the consent of the patient.

This will ensure a more complete and comprehensive database by broadening the net of reporting resources. This will enhance the accuracy, reliability and utility of the database.

To provide some teeth to enforcing this duty, the Bill states that the failure to notify the Registrar without "reasonable excuse" or furnishing false information is a punishable offence. Presumably, recourse to the courts is available as to whether an excuse is reasonable, since the Bill contains no clause ousting applications for judicial review. Indeed, clause 17 protects public officers associated with the Registry from legal proceedings for any act done in good faith during the course of discharging their statutory functions - which leaves open the door for judicial action in relation to acts done in bad faith.

What kind of information is to be collected?

What kind of information must be provided in relation to this notification duty? I understand that hospitals have different policies in relation to information collected from the patients as well as towards the degrees of confidentiality afforded to patients. For example, is the information to be collected just the details of the type of cancer or would it include the details of the treatment, its outcome, and the personal traits of patients such as their age, gender, sexual history, socio-economic status, occupation, religion, marital status and other associated risk factors? I understand these are standard questions cancer patients have to answer in setting out patient histories, which may vary between healthcare institutions.

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A judicious balance?

Sir, the information collected should not go beyond what is needed to serve the objectives of the Bill.

Obviously, this raises the issues of privacy and data confidentiality. Related concerns were raised during the public consultation process, which, incidentally, promotes the democratic value of participation and policy-making.

What is the final product? Is the legal framework provided by the Bill clear and does it strike a judicious balance between the community's right to know and to enjoy good public health policies based on this knowledge and the individual's right of privacy? How do the administrative rules set out in the Bill address the interests, expectations and duties of the relevant actors involved?

The Bill provides sanctions for the way information is handled or mishandled, as where there is a failure to discharge a duty of notification or an unauthorised disclosure of information.

How are the interests of patients protected? This is closely tied in to how the Registrar handles information on reportable diseases which he receives.

The Bill distinguishes between two kinds of categories of information: one which is traceable to the patient and one which is not.

One category of information, which is non-traceable, is termed "anonymised" information. I believe this Bill has created a new word in the English language! Clause 2 defines this as information relating to an individual whose identity is concealed, protected or "cannot be readily discovered" from that information. Clause 9 provides that where the Director so requests, the Registrar may disclose such information "on a request by any person"

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after paying a fee and subject to any conditions that the Registrar may impose.

It does not stipulate what sort of purposes "any person" may request the information for, but presumably, this must fall within the purposes of the Act, that is, to formulate public health policies or for related studies. Could the Minister please clarify if this is the case?

The second category of traceable information is termed "individually-identifiable information" as it will identify each person diagnosed and treated for cancer in Singapore. Clause 5 provides that the register containing this information is private and not open to public inspection.

To further protect the privacy of the individual, clause 8 states that an officer or agent of the Registry or one acting under the direction of the Director of Medical Services cannot be compelled to give evidence before a court with respect to any individually-identifiable information obtained under the Bill. The only exception is where the case concerns the prosecution of an offence under the Bill.

The general principle under clause 8(2) is that the Registrar or its agent or indeed "any other person" acting under the direction of the Director or Registrar "for any purpose related to the Registry" is duty-bound not to disclose what is in the Register or any individually-identifiable information he came across in performing his office. They are under an obligation of confidentiality, a breach of which attracts legal sanctions under clause 8(3).

There are instances where the Registrar, with the Director's approval, may disclose individually-identifiable information to a public officer or "any other person"; however, clause 10 confines this to the purposes of conducting national public health programmes concerning a

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reportable disease. This is consistent with the general objectives of the Bill.

Clause 10(3) indicates that individually-identifiable information is not to be readily granted. The Director must be satisfied that the national public health programme could not be carried out with anonymised information before approving any such disclosure. The clause expressly lists factors which the Director must consider in deciding whether to approve the disclosure and what conditions to attach to a grant of approval.

Sir, I would like to raise an issue which I hope the Minister can clarify. Under clause 10(2), before the Director approves the disclosure of traceable information, he must consider the identity of the public officer or persons involved in the relevant national health programme. I am wondering whether these persons fall within the scope of clause 8(2) which imposes a duty of confidentiality on any person acting under the direction of the Director or Registrar for "any purpose related to the Registry". If they are not, and since they may be handling sensitive information under clause 10 in running public programmes, will the Minister clarify whether a duty of confidentiality will be imposed on such persons under clause 10(2), perhaps through subsidiary legislation? This relates to putting into place measures under the national public health programme to protect individually-identifiable information from unauthorised disclosure.

This is important because clause 10 does not require that a patient with a reportable disease must first give consent before the Registrar, with the Director's approval, can release individually-identifiable information to a person conducting a relevant public health programme. This is distinct from clauses 11 and 12(1) where the requisite consent of the patient is needed before traceable information is released to a medical

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practitioner treating that patient or to a researcher conducting relevant public health research. The requirement of consent gives the patient some safeguard towards protecting his personal identity or the identity of the healthcare institution where he was treated; he has some say in the matter at least.

A researcher will be subject to certain penalties if he misuses the information for a purpose not specified by the Registrar or disregards the conditions governing the release of traceable information.

As we can see, the Bill sets out quite an elaborate scheme of statutory duties of reporting, rules designed to guard patient confidentiality and penalties for acts done in dereliction of statutory duty. Part of the rule of law is the principle of having clarity and apportioning obligations and liabilities and guiding conduct.

This is why clause 21 causes me some concern. This is a general exemption clause under which the Minister may, either permanently or for a certain period, "exempt any person or class of persons from any or all of the provisions of this Act". For example, by publishing an order in the Gazette , the Minister could waive any requirement of confidentiality the Bill otherwise imposes.

Sir, this is an extremely broad power, effectively providing carte blanche for the Minister in his discretion to allow someone to be given blanket immunity from the statutory regime, almost like a "get out of jail free" card.

A basic principle of administrative law and good governance is that Parliament confers discretion with the intent it should be used to promote the policy and object of the Act. The determination of what the statutory purpose is has always been a question of law which courts may review.

As formulated, the discretion on the Minister by clause 21(1) lacks clear

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criteria to guide its exercise, compared to the four conditions set out in clause 10 which guide the Director in deciding whether to disclose information in relation to relevant public health programmes.

The danger, in relation to clause 21, is that the general exemption might be given for a reason not related to the purpose of the Bill. For example, taking a worse case scenario, a person could be given a blanket exemption as a matter of a personal favour. I am sure that this cannot be the intent of the drafters of this legislation.

Unfettered discretion would undermine the rule of law as discretion should never be absolute but constrained by specific criteria. This is to prevent arbitrariness and to ensure the legal and regular exercise of public powers. Power may be absolute, but law never is.

Discretion has to be exercised within the framework and legitimate objectives of the statute. It is important in shaping the scope of Ministerial discretion, to set out the purposes or the basis upon which this discretion is to be exercised, to avoid conferring "blank cheque" powers.

Can the Minister further clarify the kind of scenarios where such a broad power may be necessary as set out in clause 21, which would justify bypassing the judicious balance struck by the Bill between patient confidentiality concerns and the community's interest in sound public health policies? Would an unreasonable use of Ministerial discretion be subject to judicial review? Further, rather than providing for a general exemption, would it not be better to have specific exceptions tied to a particular provision or section in the Act?

It would be helpful to understand the various rationales behind a decision to exempt a person from the operation of different parts of the proposed statute.

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For example, the justification for waiving confidentiality requirements in some instances may be quite distinct from reasons not to apply the enforcement provisions of the Act.

Conclusion

Sir, in conclusion, this Bill is designed to facilitate and to optimise long-term public policy-making in relation to public health issues.

An incremental and targeted approach has been pursued which allows the scheme to hit the ground running. At present, only cancer is listed in the Schedule of reported diseases. This is for reasons of gravity and practicality. Gravity, because cancer is responsible for the highest rates of death in Singapore, and practicality, because data collection processes in this respect are the most established. It is also important to socialise or enable the relevant actors to become familiar with this new statutory regime and their responsibilities thereunder.

Sir, while our Constitution may not contain a right to health, the Government is solicitous towards the healthcare concerns of Singaporeans. Rather than through the mechanism of rights, the Government prefers to formulate and execute programmes to promote this important aspect of human welfare. Consistent with the Government's ethos of pragmatism, a former Foreign Minister once said in 1993 that the Government justified itself to Singaporeans "not by abstract theories" but "by the more vigorous test of practical success". The proof of the pudding is in the eating, as it were.

It is heartening to know that the Government is taking a proactive approach towards anticipating the dimen-

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sions of future public health problems, to ensure the healthcare needs of Singaporeans are met, to plan for sufficient medical personnel, securing financing for this and identifying priority areas and trends.

Sir, I support that idea of having a National Diseases Registry. It will provide information which will contribute towards the making of sound public health policies. This should promote public welfare and benefit the community at large

4.30 pm

Dr Fatimah Lateef: Sir, I rise in support of the Bill.

The practice of medicine and healthcare is changing and evolving. There is now a paradigm shift towards evidence-based practices. Basing our policies, healthcare and clinical guidelines on published Western figures and Caucasian population statistics is not acceptable anymore. We have to utilise our own local cohort results, figures, trends, etc, to formulate practice guidelines. Moreover, with our multi-racial and multi-ethnic representations, local figures become highly relevant. This Bill will facilitate the collection of medical and health data for research, disease prevention, planning and control. It will give us our very own unique data applicable for formulation of policies and intervention in our population. And as data collected will be ongoing, it will be a good example of the time motion trial.

For the Disease Registry itself, the Bill will cover cancer, heart disease, renal disease and also stroke. I would like to propose other diseases to be included in the Registry in a staggered fashion over the years, as this will be gradually necessary. Some of the suggestions would be a registry for asthma, chronic obstructive lung disease and also perhaps

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a genetic diseases registry which will become highly relevant for information sharing, because these are highly specialised diseases in our small society.

The setting up of these registries requires several key factors. First, the cooperation from all stakeholders in order to achieve the complete and comprehensive data we want.

Second, a dedicated secretariat to run the system, handle administrative issues, requests, data extraction, etc. Here, Sir, I would like to suggest perhaps that consideration be given for recruitment of retired nurses and healthcare workers, because their background and knowledge will be a bonus for this type of work and they are quite used to issues of confidentiality and will certainly serve us in an advantageous manner.

Third, the need for a clear legal framework to protect data from abuse. The framework, when ready, should perhaps be made public on the website, so that everyone is aware of the requirements.

Fourth, the consent acquisition process needs to be formal and clearly specified. This must also include the need to understand the reasons for request of data and its utilisation.

Finally, it will also be optimal if we can follow a relatively similar or standardised structure format for all the registries, eg, the cancer registry, which started many years ago, was one where healthcare staff had to complete the form manually and then faxed or posted out. In this day and age, electronic submission would be most optimal and efficient, and it must certainly be the way to go forward.

It is essential to ensure 100% compliance and participation, and that is why we have this legislation, and this will no doubt affect the quality of data that

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we get as well. The Ministry needs to set a timeline for entry and data submission. Perhaps this can be set at about 2-3 weeks after diagnosis or after discharge.

Sir, safeguarding and protecting confidential information must go beyond just having a set of rules, because once improper disclosure of data and information happens, it is already too late, even as there is a hefty punishment for the offender.

For security, Sir, the public will be reassured by the administrative safeguards and level of protection that will be put in place to prevent abuse and minimise errors. These will have to be emphasised to the user and also the applicant to ensure compliance. It would also be good to have the following in place:

First, for applicants who wish to request data for a study, there must be support from the ethics committee or the institutional review board approval letter from their relevant institutions. A copy of the study protocol and questionnaire should also be forwarded to the secretariat.

Second, all publications related to the application and use of these data must be sent to the secretariat. At the more preliminary stage, if there are controversial results which are seen, it is important that these must be highlighted to the secretariat as soon as possible. The authors may want to acknowledge the efforts of the Registry staff and secretariat as relevant.

I would also like to suggest that applications be divided into at least two different categories. Firstly, the request for generic information and data where trends are important, eg, for policy formulation and guideline writing. Secondly, the request for more personal and individualised information data or report. This must be handled even more

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cautiously and be reviewed at different levels of staff in order to prevent abuse and protect confidentiality. More public education to explain that the rules being drawn up are watertight to prevent mishandling of information is also going to be beneficial. The public must be assured that the legislation is not meant to be intrusive of their personal medical information and is down with proper safeguards to their privacy.

Sir, with reference to Part III, clause 6, on the use of the term "manager", different health institutions may define "manager" in different terms. I think we need to be a little bit more specific here as sometimes the duties and job description of the manager or certain officers, whether it is a divisional or general manager, or whether it is the chief operating officer who does the job, we need to be clear as to who has the ownership and responsibility of this very important process. And, certainly, I think it will be good if we can specify this a bit more.

Finally, Sir, for the fees, there should also be some reasonable guidelines, and this should be kept as affordable as possible. In terms of research today, grants are highly competitive and are often quite quickly and rapidly utilised and consumed once they have been received for the many competing needs and requirements on the research projects which are ongoing. Thus, keeping the fees affordable will be very helpful.

Let me now just say a few words in Malay, Sir.

( In Malay ): [For vernacular speech, please refer to Appendix A.] We should always adapt ourselves to the situations and needs in the field of medical research, which has made many developments. However, with regard to healthcare, care-

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ful planning is a very important factor to ensure its effectiveness. For effective planning, we should have sufficient data, which should be accurate, stable, balanced and bring about the desired benefits. In this matter, I laud this National Registry of Diseases Bill which I feel comes at the right time. It is aimed to facilitate research on disease prevention and control, and to make it mandatory for the health institutions to report new cases, and the information collected is used when making our national health policies.

Mr Speaker, I strongly support this Bill. I would like to raise a few facts. I would like to suggest that there should be a committee to study the forms and website to be filled in for all four registries of diseases, which will be formulated soon. These forms, where patients’ facts, health and diagnosis are filled in, should not be so difficult and lengthy. It should be focused on the important information in brief.

Second, only the data of Singaporeans should be collected and considered. Although, at present, hospitals and the health institutions in Singapore are widely handling patients from overseas, it is the facts on our indigenous people that will be important in this issue.

Third, I would like to touch on the issue of consent from the patients. Explanations made should be firm and easily understood to them. They should be informed that their personal data will be handled with confidentiality and fairness. Therefore, any issue of ethical and moral conflict will not happen.

Fourth, the four Registries are already being used by some of our institutions. For example, the Cancer Registry is organised successfully now. I have read that these Registries will be formalised in two years' time. I would like to suggest, Mr Speaker, that we should implement it

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as soon as possible when we are ready, because this is an important and good step.

*Cols. 2625-2626.

4.42 pm

Mr Chiam See Tong (Potong Pasir): Sir, may I, first, comment on the issue of doctor/patient confidentiality? At common law, the courts in many countries still respect the confidentiality of information obtained by a physician in his professional capacity. He cannot divulge that information without the prior consent of the patient. However, in many other jurisdictions, he may be in conflict with the law. The international code of medical ethics that has been adopted in principle by all countries, whose medical associations are affiliated to the World Medical Association, embodies the Declaration of Geneva (1949), which states, "I will respect the secrets which are confided in me."

In circumstances where there is public interest in which the court requires disclosure of information, the physician may risk imprisonment for contempt of court if he declines to give the information. This is the position in Great Britain, also in Singapore before the passing of this Bill, and in about 15 states in the United States. In about 35 states, however, varying degrees of privilege, precluding disclosure of confidential information obtained in the course of treating a patient are allowed, but the privilege can be waived in certain circumstances, eg, if the patient offers himself or his physician as a witness, although this is not the invariable rule. The tendency of the courts is to allow privilege to the physician.

Now, allow me to touch on clauses 8 and 10. Clause 8(1) of the Bill protects the anonymity of information submitted to the Registry. Sub-clause 8(2) of the Bill prohibits the disclosure of any individually-identifiable information, and sub-clause

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8(3) provides the punishment for breaching sub-clause 8(2). The fine is a hefty $10,000 and a jail term of 12 months, or to both. This heavy punishment gives confidence to patients who have divulged their individually-identifiable information to the Registry to ensure that it will not be leaked to third parties. I am agreeable that there be a provision whereby the Registry can disclose information held by the Registry in an anonymised form on payment of an appropriate fee. However, I cannot agree with clause 10(1) whereby the identity of a patient is disclosed in regard to a reportable disease for the purposes of conducting national public health programmes. I cannot see the relevance of the name of the patient to the disease he suffers from.

Personally, I see no necessity to disclose the name of the patient to the Registrar as long as all the particulars of the reportable disease are disclosed to him.

Now, may I get some clarification from the Minister on the following:

(1) Under clauses 10, 11 and 12, will the patient be allowed first to be told that his name shall be revealed together with the sickness?

(2) If so, will he be allowed to appeal against the Registrar's decision if he objects?

(3) Is the Minister willing to establish an appeal mechanism comprising a review committee?

The appeal mechanism is to assure the public that there is no abuse of the system. This assurance is important because a person's sickness is very private to him and normally, he does not want it to be divulged even to a limited number of persons who are strangers.

Mr Khaw Boon Wan: Mr Speaker, Sir, I thank the Members who have spoken in

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support of this Bill. I particularly want to thank Prof. Thio for a very clear explanation of the various clauses and various obligations and objectives that we set up under this Bill. Mr Sam Tan wanted a clearer explanation of the benefits that patients can expect out of our setting up a National Registry of Diseases. In a way, Dr Lam, in his speech, has clarified, from a doctor's point of view, what are those public health objectives. Let me illustrate in my own way using the example of, say, lung cancer. As I said just now, the Singapore Cancer Registry is now almost 40 years old. And if you look at our earlier set of data, they show clearly that Singapore ranked very high in age adjusted mortality due to lung cancer among men, and we were among the highest among the developing countries at that time.

Research on data drawn not only from our own Cancer Registry but from many other global cancer registries proved strong correlation between smoking and lung cancer. So like others, we then embarked on an aggressive anti-smoking campaign. As a result, our smoking prevalence in males dropped from 37% in 1984 to 22% in 2004, now among the lowest in the world. In turn, these efforts have reduced lung cancer rates in males from 65 per hundred thousand population in 1978 to now less than 45 per hundred thousand population. The benefits in terms of lives saved and the miseries reduced are immense.

The Cancer Registry also helps us to prioritise our research focus, again with a view to benefit patients. Let me give another example - stomach cancer, which is now topical. It is currently the fifth most common cancer among Singaporean males. Among females, it is ranked number seven. Although there has been an overall improvement in cancer survival

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in Singapore over the years, the five-year age standardised survival rate for stomach cancer remains very low, at only 25%. In other words, only one-quarter survives more than five years.

There is obviously room for improvement and we will put some research priority on stomach cancer to improve early detection and its treatment. While the benefits of a disease registry are more easily explained, the key concern, which all Members have rightly focused their comments upon, pertains to privacy and patient confidentiality. How do we protect privacy and patient confidentiality while ensuring that their data can be put to good use? How do we retain the trust of the patients and the public that we and the doctors will not abuse their trust? My Ministry shares these concerns. Indeed, it is precisely because of these concerns that this Bill is formulated. And when drafting the Bill, we strive to balance the potential benefits to society with the rights of the individual to privacy and confidentiality of information.

First, we drew upon the excellent works and the recommendations of the Bioethics Advisory Committee (BAC) chaired by Prof. Lim Pin. Earlier this year, Members will remember that the BAC published its report titled, "Personal Information in Biomedical Research", after an extensive public consultation among doctors, members of the public, experts in ethics, international scientists, and so on. Among other things, the BAC concluded that it is "ethically proper for medical information to be disclosed by physicians to national disease registries without patients' consent, provided that adequate privacy and other ethical safeguards are in place and patients are appropriately informed". I would suggest Mr Chiam read up the BAC report. Because, while I note what Mr Chiam has said about traditional medical views on sharing of individualised information, developments in recent years have updated many of those views.

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Second, we studied similar legislation in the US, Canada and Australia for reference when crafting the provisions on patient confidentiality. They have much more experience in protecting patient confidentiality and their disease registry legislation has similar provisions on release of identifiable information under certain conditions.

Let me assure this House that the data that the Registry collects will be treated with the strictest confidence. First, any unauthorised disclosure of identifiable data would be a criminal offence. Second, we will only collect information that is absolutely essential for healthcare policy making. Third, we will spell out clearly in subsidiary legislation the type of information to be collected. Fourth, any disclosure of information will be in anonymised form. This will be the default position. However, if it is established that disclosure of individually-identifiable information cannot be avoided, then there should be prior consent by patient.

We have, however, made a provision in the Bill for power to disclose identifiable information without prior consent in the event that there is such a need to support certain public health programmes. Understandably, these provisions drew the attention of Members, including Mdm Halimah and Mr Sam Tan. This is not a local innovation. And by the way, even the word "anonymised" is not a local innovation. Australia, United States and Canada have similar provisions in their registry legislation and for good reasons. The function of a Registry is limited to collection, analysis and reporting of routine statistics. Registry data may however, from time to time, show worrying trends that are beyond the scope of the registry to investigate. The purpose of setting up the Registry is really for us to be aware when a worrying trend develops. And once you identify a problem, you need to get to the bottom of it - why is there a worrying trend?

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Consider this scenario. Supposing we introduce a new national mass screening programme for a particular cancer, "cancer X". After several years, the expectation must be that if the screening is effective and it is well done, then we should expect the incidence rate to go down and with it, survival rate to improve. But supposing that having done so, we found from the Registry data that that is not the case, and we continue to see a rising trend and a significant number of very severe "cancer X" cases; in other words, patients presenting themselves at stage four, very advanced stage of severity. What is wrong? Then, you must ask the questions: What is the reason? Is it because the screening is poorly done? Is it generally poorly done or only certain screening centres are particularly bad? Why is that so? What is wrong? Or is it because, while we intended it to be a mass screening, significant segments of a population are not coming forward to be screened? Is it a particular racial group or a particular age group?

I think these are critical questions that, as Minister for Health, my job is to try to understand them, so that we can take corrective action. But for us to probe into such a scenario, the Registry may need to release identifiable data to the investigators that we set up, to enable them to match the Registry data with, for example, the cancer screening data, so that the experts can identify the problem and then to address it in order to formulate a more effective cancer programme. So far, we have not encountered such a scenario here. But I have read of such development, which cropped up either in Australia or New Zealand, of a particular cancer screening programme. When they finally investigated and got to the bottom of it, they were able to discover that a particular laboratory was doing the testing poorly so that many of the cancer cases were missed.

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Without the power of such a provision, getting such a conclusion will be almost impossible. So, taking a leaf from the experience of the US, Canada and Australia, we think it is appropriate now to include such a provision in our legislation. Let me assure the House that such disclosure would only be allowed if the Ministry is fully satisfied that a programme cannot be effectively carried out with anonymised data. There will be rigorous scrutiny of every such request before release of data. Stringent requirements will also be put in place for maintaining confidentiality and limiting the use of data for the specified purpose. Certainly, the release of the individualised data is not meant to be public, that so and so has "cancer X". It is only to release to the investigators that the Ministry of Health appointed, for example. The Director of Medical Services can also request for appropriate ethical review to assist him in evaluating complex requests for such data.

Prof. Thio asked if officers, under clause 10(2), are bound by the confidentiality requirements of clause 8. Let me clarify here that the Registry officers are bound by clause 8 to protect the confidentiality of identifiable data stored in the Registry. On the other hand, those who received identifiable information under clause 10 to pursue an approved national public health programme will in turn be bound by the conditions imposed under clause 10, to protect the data from unauthorised use and disclosure.

Mdm Halimah suggested that we refer all requests for individually-identifiable information for public health research to the National Research Advisory Committee, otherwise she felt that an inordinate amount of power would have been rendered to one person in the Registrar. That is a fair point. But let me clarify that, indeed, all research proposals

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would have been reviewed and supported by the respective Institutional Review Boards (IRBs) which comprise quite a number of people before they are submitted to the Registrar.

And my Ministry has strict operational guidelines for all IRBs and these include guidelines on how informed consent should be obtained. Hence, for each research proposal, several people would have been involved in its approval process. Clause 12(5) is to empower the Registrar to seek a second opinion through the National Research Advisory Committee in the event that he has concerns which were not adequately addressed by the IRBs. I think this is an adequate safeguard.

Let me now address the other queries by the Members. Mdm Halimah and Dr Fatimah sought clarifications on clause 2 definitions of the Bill. First, the Bill applies to all healthcare establishments irrespective of whether they are in the public or private sector. Second, the manager or person having the management or control of the healthcare institution would be the one held accountable for notifying the Registry. We have not listed the specific titles as these could vary from one institution to another.

Prof. Thio found clause 21 on general exemption to grant too broad a power. I think she described it as giving me the power to issue "get out of jail free" card. That is not the intent. Let me clarify that this exemption power will primarily be used to exempt managers of healthcare institutions from having to notify the Registry of persons diagnosed with or undergoing treatment for a reportable disease, if it will create unnecessary duplication in reporting. This can happen. This is to reduce the overall burden on reporting.

Let me assure this House that clause 21 will not be used to exempt anybody from the obligation to respect the confidentiality of identifiable information

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stored in the Registry. This is not the intention behind this provision.

Prof. Thio also commented on judicial review and to what extent is judicial review available under the Bill. My understanding in this aspect of the law is that judicial review is available to any person who can show the court that he should be granted relief. I think Mr Chiam made a similar query as well.

As to the definition of "cancer" by Dr Lam, I stand advised by the professionals. And I think the Director of Medical Services will set up an expert committee to advise him, among other things, to look through the current data submission to the Cancer Registry, to see whether we could add or substract, whether we can improve the form and, along the way, I think they would also sort out the question of which cancer to include and which to exclude.

Mr Speaker, Sir, I thank Members for supporting this Bill, and I share their concerns on patients' confidentiality, and I share it deeply. When drafting the subsidiary legislation, we will be particularly mindful of ensuring adequate checks and balances. And this is part of the reason why we are taking a cautious incremental approach, beginning with the Cancer Registry, which has an almost 40-year history.

I note the call by Dr Lam and Dr Fatimah to expedite the inclusion of other diseases under the Bill. We will learn from the experience of the Cancer Registry before we embark on any such extension. Meanwhile, a Committee has been formed to advise the Ministry on future expansion.

I also note the call by Members, including Dr Lam, to ensure hassle-free processes and that fees should be kept reasonable. These are valid concerns and

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my staff would streamline the notification processes and the use of electronic means of data submission as far as possible. This would help reduce the operating costs.

I thank the House for their support.

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 Wan].

Bill considered in Committee; reported without amendment; read a Third time and passed.