Health testing

37.66 In addition to meeting the specific requirements of different types of migration visa, applicants for most visa classes, with a few exceptions, must meet a general health requirement.^[76] This requirement may result in refusal of applicants who pose a public health risk, such as people who are carrying infectious diseases. Applicants who are likely to need significant access to health care or community services in the future may also be excluded under the health requirement. The standards expressed in the health criteria and migration legislation are established on the advice of the Department of Health and Ageing.

37.67 Because genetic information can reveal important information about an applicant’s current or future health, it may be relevant in making determinations about the health requirement. Genetic information relating to health has two potential applications in migration decision making:

• to provide information about a current medical condition; and
• to make predictions about a future medical condition.

37.68 This raises issues about how that information is collected, used and disclosed.

Current law and practice

37.69 Under the Migration Regulations, to meet the health requirement to migrate to Australia, an applicant must:

• be free from tuberculosis; and
• be free from a disease or condition that is, or may result in the applicant being, a threat to public health in Australia or a danger to the Australian community; and
• not have a disease or condition such that he or she would be likely to require health care or community services while in Australia, where the provision of the health care or community services relating to the disease or condition would be likely to:

1. result in a significant cost to the Australian community in the areas of health care or community services; or
2. prejudice the access of an Australian citizen or permanent resident to health care or community services.^[77]

37.70 Failure to meet these criteria may cause a migration application to be refused, even if the applicant guarantees not to seek access to services once in Australia.^[78] In some visa classes, the Minister may waive the access to services criterion (namely, the third dot-point above) where:

• an applicant’s employer undertakes to cover the costs of health care and community services;^[79] or
• the Minister is satisfied that the granting of the visa would be unlikely to result in undue cost to the Australian community or undue prejudice to the access to health care or community services of an Australian citizen or permanent resident.^[80]

37.71 The Procedures Advice Manual outlines detailed policy on the assessment of the health requirement and includes guidelines provided to examining doctors.^[81]

37.72 To determine whether an applicant meets the health requirement, the migration officer dealing with an application must seek the opinion of a Medical Officer of the Commonwealth (MOC).^[82] There are only a small number of cases in which an MOC forms an opinion that an applicant does not meet the health requirement—usually less than 1% of all cases considered by an MOC. As MOCs often discuss doubtful cases with each other to form a collegiate opinion, applications are generally refused only when the health criteria are clearly not met. The Inquiry understands that cost estimate guidelines for MOCs are in the course of development, but currently MOCs use data from disparate sources.

Medical examinations

37.73 Under the Migration Act, the Minister may require an applicant to be examined by a qualified person to determine the applicant’s health, physical condition or mental condition.^[83] This involves taking a detailed medical history that covers all previous medical conditions, injuries and any treatments received, and performing a physical examination that encompasses all the major bodily systems, evidence of drug-taking, and the senses. A chest x-ray and blood test are standard for adults and older teenagers. A family history may be requested if the examination indicates that the applicant has an hereditary condition. All information and tests required for assessment are set out in forms created by DIMIA and can be changed at any time.^[84] Once the examination and tests are completed, the doctor must recommend whether any significant findings exist. The doctor indicates whether such findings exist by making an ‘A’ recommendation—no significant findings exist—or a ‘B’ recommendation—significant findings exist.^[85] Guidelines in the Procedures Advice Manual lists criteria that must be met for an ‘A’ recommendation to be made. These criteria include a requirement that:

there is no family history of a genetically determined disorder, for example, hereditary anaemias, coagulation disorders, Huntington’s disease, and so on.^[86]

37.74 MOCs assess whether an applicant meets the health requirement on the basis of this information, but may request further investigation.^[87]

37.75 Procedures for performing medical examinations are governed by policies and practices developed by the Department of Health and Ageing in consultation with DIMIA. The Migration Regulations do not impose restrictions on the type of tests that may form part of this examination. MOCs may request any test that is relevant to forming an opinion about whether the applicant meets the health requirement, although in practice an invasive or risky procedure would be requested only with circumspection.

37.76 In practice, non-standard tests are requested only where a condition is indicated by physical symptoms or a clear family history. For example, an MOC may order tests where an applicant shows both the physical signs of haemophilia and there is a family history of the condition.^[88]

37.77 If an applicant refuses to undergo testing or examination, doctors must make a recommendation based on the information available. Migration officers may assess the application on the information on file.^[89]

Determining whether the health requirement is met

37.78 Once the risk of tuberculosis and of any other disease that may threaten public health has been excluded, the MOC must calculate how much access to health and community services an applicant may require while in Australia for any identified condition. The purpose of this calculation is to assess whether a ‘significant cost’ would be incurred, or whether access by Australians to health care or community services would be prejudiced.

37.79 The Migration Regulations are silent on how this is to be determined, except that the MOC must estimate the use of costly treatment or resources, ‘regardless of whether the health care or community services will actually be used in connection with the applicant’.^[90] The Inquiry has not been made aware of any official guidelines about how this is to be done because ‘Notes for the Guidance of Medical Officers for the Commonwealth’ have yet to be finalised. The Procedures Advice Manual provides only minimal guidance^[91] but MOCs are expected to be skilled in these assessments.

37.80 As indicated above, the Migration Regulations require that an applicant be free from a disease or condition that would be likely to result in a ‘significant cost’ to the Australian community in the areas of health or community services. A ‘significant cost’ is not defined, but departmental practice, stemming from Department of Health and Ageing advice (as noted in the Procedures Advice Manual), is to make a monetary allowance over and above a multiple of the average annual cost of health and community services incurred by Australian citizens or permanent residents.^[92] MOCs, in consultation with the Department of Health and Ageing, calculate the cost of health care and community services from Pharmaceutical Benefits Scheme data, hospital costs data, Centrelink benefits data, and other similar sources.

37.81 The Migration Regulations also require that an applicant be free from a disease or condition that will prejudice the access of other Australian citizens or permanent residents to services. This might include access to scarce services such as organs for transplantation, some forms of respite and specialised nursing care, or dialysis. The demand for scarce resources is derived from Department of Health and Ageing advice, as well as individual state or territory health authorities.

37.82 The Migration Regulations do not specify a temporal dimension to the health requirement. Thus, the Regulations make no distinction between a significant cost that is likely to be incurred in the near future and one that is likely to be incurred in many years time. DIMIA policy, however, is to look at all significant costs and access to services that may foreseeably be used for that health condition.^[93]

Predicting the need for health care and community services

37.83 Genetic information can reveal a variety of things about an individual’s health status, which may have a bearing on his or her need for health care and community services. This information may demonstrate:

• current conditions (for example, cystic fibrosis—a congenital genetic disorder);
• conditions that will definitely develop in the future (for example, Huntington’s disease);
• the presence of genetic mutations that are predictive of a person’s health in the future (for example, breast cancer); and
• carrier status for a condition that might affect offspring (for example, Tay-Sachs disease).

37.84 The Inquiry understands that predictive genetic tests are not ordered under currentDIMIA policy because they are regarded as incapable of predicting, with sufficient certainty, that an applicant will develop a condition requiring access to health services.^[94] MOCs focus on detecting conditions suffered by an applicant at the time of the examination and the likelihood that the condition will require care and treatment later, rather than looking for possible future conditions.^[95] However, the permissive nature of the Migration Regulations would allow such testing if it were considered relevant.

37.85 In the past, an applicant could fail the health requirement if he or she had a condition that would be passed on to children. DIMIA has now moved away from this approach, and failure on these grounds is no longer provided for in the Migration Regulations.^[96]

Consent and counselling

37.86 There are no prescribed procedures for dealing with consent or counselling in relation to genetic tests. With regard to consent, applicants are informed that they are not required to undergo tests, but that their application may not be able to be processed unless they do so. In this environment, applicants may feel under some pressure to agree to a requested genetic test and this may have implications for an applicant’s ‘right not to know’ about his or her genetic status.

37.87 In relation to counselling, where potentially distressing results have been returned (whether genetic or otherwise) and are known to MOCs, but possibly not to the applicant, an MOC recommends that the applicant choose a medical practitioner to whom the results can be delivered. This medical practitioner will then deliver the results to the applicant and is requested to provide such counselling as would normally be delivered in the course of medical treatment in that country.

Issues and problems

37.88 At present, DIMIA rarely uses genetic testing for the purpose of assessing compliance with the health requirement in the Migration Regulations because it does not regard most current tests as sufficiently accurate.^[97] Yet, as the cost of testing falls and the range and accuracy of available genetic tests improves, there is potential to use genetic testing more widely as an indicator of an applicant’s current or future health.

37.89 As noted in this chapter and elsewhere in this Report, the use of genetic testing raises a number of ethical concerns ranging from the scientific reliability of the testing to the need for patient counselling. The link between a genetic mutation and a specific disorder is often complex, and may involve an assessment of multiple genes, the penetration of those genes, and environmental factors. Genetic disorders may manifest differently in different people. For some disorders, early detection and treatment can lessen the health effects of a condition. Given this, test results require appropriate interpretation for the purpose of determining health status.

37.90 The use of genetic testing in this context highlights the need for voluntary and informed consent and consideration of the right not to know. Faced with the decision to undergo a genetic test or possibly be refused a visa, migration applicants might feel they have little choice. Many applicants might not understand the full ramifications of taking the test, such as its relevance for their family members. This is a particular concern in relation to predictive testing because many applicants may not wish to learn that they may suffer a genetic disorder later in life. The Human Genetics Society of Australasia was opposed to the use of predictive genetic tests for immigration purposes for this reason, commenting that:

As a matter of principle it seems unacceptable to require an Australian citizen to discover information about future risk of disorder when this information is not wanted. It seems equally unacceptable to make it a requirement that a prospective migrant be burdened with such unwanted personal information.^[98]

37.91 Genetic testing for health purposes also raises privacy concerns similar to those associated with kinship testing. An applicant might want the privacy of test results to be maintained, for example to avoid the stigma or discrimination associated with a disorder. Although DIMIA observes an individual’s privacy in relation to his or her medical details, if the health requirement is not met the applicant’s sponsor may be informed of the reasons for this decision. This may give rise to concerns about the privacy of the applicant’s genetic status.

Submissions and consultations

37.92 The Centre for Law and Genetics commented that many of the considerations that apply in relation to discrimination in employment and insurance also apply in the context of migration.^[99] Concern about the possible use of predictive genetic testing was voiced in many submissions and consultations. For example, the Migration Institute of Australia stated:

Overall, the implications of genetic testing in regards to health, are quire daunting. There is potential for prejudice in prohibiting the immigration of certain people based solely on prospective health issues.^[100]

37.93 The Human Genetics Society of Australasia suggested that:

While DNA profiling is legitimate to establish family relationships upon which applications for immigration may be based, it would be as unacceptable for further genetic information to be used to select against individuals on the basis of projected disorders as it would be to use such information against citizens.^[101]

37.94 The Anti-Discrimination Board of NSW stated:

While we have concerns about the extent to which it is necessary to exempt the [Migration Act] from the DDA, we recognise that people’s health status is a relevant factor in determining applications under the Migration Act, given that consideration needs to be given to the future burden on the Australian health system.

Nonetheless … the scientific reliability of genetic information in determining the extent to which people are likely to develop health conditions in future, is far from clear. It is certainly conceivable that people’s immigration applications may be refused on the basis of their genetic make up, even where the possibility of developing the condition is remote or where their health is unaffected and therefore there is no likelihood that they present a future burden on the health system. … There is a need to ensure that immigration department decision makers understand the different types and implications of genetic information.^[102]

37.95 Submissions supported a review of DIMIA’s policies to address issues raised by genetic testing, with some commenting that extensive consultation and the involvement of the HGCA would be desirable.^[103] DIMIA itself welcomed the development of guidelines on the use of genetic tests and information.^[104]

Inquiry’s views

37.96 While the Inquiry understands that genetic testing is rarely used in assessing the health requirement, the permissive nature of the Migration Regulations and the Procedures Advice Manual leaves scope for increased use. An expanded use of genetic testing for migration purposes may be a legitimate tool for assessing whether a migration applicant satisfies the health requirement. However, such use should also be attended by suitable safeguards that extend to the use of family medical history as well as genetic test information.

37.97 In light of these considerations, the Inquiry considers that the Department of Health and Ageing, in consultation with DIMIA and the HGCA, should develop policies on the use of genetic information for the purpose of assessing the health requirements under migration legislation. The development of policies on the use of genetic information will assist MOCs in interpreting test results and applying these results in assessing the health requirement. These guidelines should address the need for consent to be obtained and adequate counselling to be provided, where appropriate. In developing these policies, DIMIA should have regard to its current methods for dealing with HIV testing, which provides an effective model for dealing with sensitive health information. Specific guidance on the use of predictive tests will lay down a framework for new tests as they are developed.

37.98 In particular, DIMIA should finalise its guidelines to MOCs on the assessment of the health requirement. These guidelines should direct MOCs on how the issues raised by genetic information—including the need for consent, confidentiality, counselling, and accurate interpretation and application—are to be addressed.

37.99 Chapter 5 proposed that the HGCA be established to perform a number of functions, including providing expert advice on matters relating to human genetics, upon the request of a responsible minister. The Inquiry considers that departmental policies about the use of genetic information in assessing the health requirement should be developed in consultation with the HGCA.