Media briefing note
Thursday 29 May 2003
Australian Law Reform Commission/Australian Health Ethics Committee
Essentially Yours: The protection of Human Genetic Information
Briefing note: Kinship (refer Vol 2, Ch 35-37)
DNA genetic testing provides a powerful tool for identifying or dispelling biological links between individuals—that is, in establishing kinship. Genetic information not only has a strong familial dimension, but also can establish links beyond the individual to a broader community or descent group. The report considers the use of genetic testing and information in establishing kinship across a number of contexts, including parentage testing, immigration and communal identity.
Parentage testing refers to testing—these days usually involving DNA testing and analysis—conducted to confirm or deny the biological parentage of a particular child or person. Most parentage testing relates to questions of paternity, but there are circumstances in which maternity may be unclear (eg where a child has been separated from its mother). There are many reasons why a person may seek parentage testing, such as family law proceedings relating to residence or contact orders and child support; succession to estates; immigration applications; identification of missing persons or human remains; and personal or genealogical interest.
The inquiry received a substantial number of submissions on this issue, many with strong views expressed about the regulation of parentage testing in Australia. Father's rights groups generally argued against more formal regulation—in particular against requiring consent from the other parent, or any involvement of the Family Court, or accreditation of testing laboratories. On the other hand, the inquiry also heard concerns about testing being conducted by non-accredited laboratories through mail order or the Internet, and the ethical and quality control issues this raised.
The consequences of parentage testing can be profound, both for the individuals tested and for others whose family status may be affected by the test results. Testing results may lead to the destruction of long-standing relationships and have significant financial consequences.
A large number of paternity tests take place outside the court system—with or without the consent of all of the parties concerned. It has been estimated that 3,000 paternity tests are carried out in Australia each year, with only a relatively small proportion of these resulting from court orders.
The report's key recommendations in this area include:
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In common with the general thrust of the report, the dignity and autonomy of human beings requires that non-consensual DNA parentage testing should be prohibited, unless there is a court order or other lawful authority.
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DNA parentage testing only should be conducted by laboratories accredited for this purpose by the National Association of Testing Authorities, Australia (NATA). Further, NATA should review its accreditation requirements for DNA parentage testing to ensure that they meet the highest technical and ethical standards, particularly in relation to consent to testing, protecting the integrity of genetic samples, and providing information about counselling.
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The Therapeutic Goods Administration (TGA) should be empowered to regulate access to home use or 'DIY' parentage testing kits, having regard to both technical/quality control considerations and the personal sensitivity of such tests—especially in the absence of counselling.
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DNA parentage testing involving children under 12 should be allowed only with the written consent of both parents, or pursuant to a court order. This rule also should apply to children 12-18 years of age who lack sufficient maturity to make a free and informed decision about testing.
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DNA parentage testing involving children of 12-18 years who are sufficiently mature to make a free and informed decision should be permitted only with the consent of the child, or pursuant to a court order.
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The results of DNA parentage testing should not be admissible in any legal proceedings in Australia unless the testing complies with the laws and regulations described above. This would reinforce existing evidence law, which discourages the admission of improperly obtained evidence, and also would serve to deter individuals from resorting to non-accredited testing by limiting the use to which such unauthorised test results may be put.
Immigration. Genetic test information has two possible applications in the context of immigration:
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kinship testing—to confirm family relationships needed for some visas (such as family reunion) and to detect fraud (such as sibling marriages and child trafficking), as is already utilised in cases where the applicant may have difficult in providing the necessary documentary evidence; and
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health testing—to determine the health status of people applying to migrate. Genetic testing has not been a feature of prospective health assessment to date; however, this may change when genetic testing becomes a more routine part of the provision of medical services generally.
The use of genetic testing by immigration authorities is primarily regulated by departmental policy guidelines, rather than by legislation or regulations. The report recommends that the use of genetic testing in migration decision making be subject to more formal control. The report recommends that the Department of Immigration and Multicultural and Indigenous Affairs (DIMIA) review its policies and procedures regarding kinship testing to ensure—that visa applicants are better informed about the potential implications of genetic testing; that they are encouraged to seek counselling; and that results are not disclosed to third parties without consent. The report also recommends that DIMIA develop policies on the use of genetic information (including family medical history) for the purpose of assessing the health requirement under migration legislation.
Genetic testing, kinship and identity. The propriety of using genetic testing and information as an aspect of determining communal identity—including Aboriginal and Torres Strait Islander identity—arose as a live issue during the inquiry following controversy over challenges to the eligibility of a large number of people to vote in ATSIC elections in Tasmania.
The report makes no recommendations for change in this area, but provides substantial research about how such matters have been handled in Australia and overseas to assist any further consideration of these issues by others and to promote a broader community understanding of these sensitive matters. Current scientific knowledge suggests that there is no genetic basis for 'race' or ethnicity, which are social constructs—more often connected to self-identification and community acceptance than clear biological connectedness. The report is sceptical about the wisdom of using genetic testing to establish or refute claims of Aboriginality, and suggests that ultimately these are matters for Indigenous people themselves, working through their own communities, institutions and consultative processes.