DNA requires debate, legislation

New uses for DNA information are permeating Australia without debate about how we want to regulate either a useful guide to health or a tool to discrimate against people who – by accident of birth – are slightly different from whatever ‘average’ is. Some people are already being barred from accessing insurance or superannuation based on the DNA of their relatives. CLA believes national legislation is needed.

On 9 Sept 09, CLA asked the Privacy Commissioner to take the lead in a national debate over the use of DNA in Australia. Here is the Deputy Privacy Commissioner’s response to our email, along our email and background  material.

REPLY FROM THE OFFICE OF THE PRIVACY COMMISSIONER

28 September 09
Dear Ms Klugman
(We’re sure he meant to write ‘Dr Klugman’)

Thank you for your email dated 9 September to the Privacy Commissioner regarding the need for a national debate on DNA issues in Australia.  The Commissioner has asked me to respond.

The issue of the collection and handling of an individual’s genetic information is an area of significant interest for the Office.  The Office is aware that genetic testing has recently been raised in the media in relation to the study conducted by the University of Melbourne regarding the reduction in individuals who would opt for genetic testing if the findings would need to be disclosed for life insurance purposes (at:  www.theaustralian.news.com.au/story/0,25197,26036192-23289,00.html).

The Office acknowledges that while the collection and handling of genetic information raises important concerns regarding appropriate safeguards and protections, it is also an issue that cuts across a broad spectrum of legislative areas including health, law enforcement and employment and across jurisdictional boundaries.

The Office’s view is broadly that appropriate privacy protections are important to engender community trust in the collection, handling, use and disclosure of genetic information.  In particular, the issues of consent, choice, control and security are significant issues to be addressed in developing policy and practice for the handling of genetic information in specific contexts.

In 2006 an amendment to the Privacy Act 1988 (Cth) included “genetic information about an individual that is not otherwise health information” in the definition of “sensitive information” (see s.6).  However, as you would be aware, the Office is subject to its jurisdictional limitations and in instances where, for example, DNA material is collected by state law enforcement agencies, it is generally beyond the jurisdiction of the Privacy Act and this Office.

Despite these jurisdictional limitations the Office has consistently supported reforms aimed at enhancing national consistency in relation to health privacy including the collection and handling of genetic information.  This includes the development of a single set of privacy principles for Australian and ACT Government agencies and the private sector, which could be adopted in mirror legislation to bind state and territory agencies as recommended by the Australian Law Reform Commission in their Report 108; For Your Information – Australian Privacy Law and Practice.

Currently the Office is awaiting the Australian Government’s response to the ALRC’s recommendations which, among other things, included that health information should be regulated under the proposed single set of privacy principles (the model Unified Privacy Principles) and regulations under the Privacy Act – the new Privacy (Health Information) Regulations (see Recommendation 60-1 at:  www.alrc.gov.au/inquiries/title/alrc108/index.html).

The Office has also provided comment on the privacy implications that the collection and handling of genetic information raise including in such areas as genetic testing, registers and research (for example see the Office’s submission to the Inquiry into the Protection of Human Genetic Information at:  www.privacy.gov.au/materials/types/download/9101/6750). In considering these issues the Office is also aware that legislative protection around genetic information is a complex and multifaceted issue that will need to be addressed by a range of stakeholders, including those within the privacy arena.

Again, I thank you for your email and the information about your organisation’s interest in this area.  The Office looks forward to future opportunities to continue to contribute to the development of policy in this area.

Yours sincerely

Timothy Pilgrim
Deputy Privacy Commissioner


CLA’s email and press release that prompted the above response from the Office of the Privacy Commission are:

Attention: Privacy Commissioner

Dear Karen Curtis

There is an important issue running in the media in Australia, on DNA.
In Perth it is focused on police wanting to take samples of everyone they detain.
Elsewhere, the focus is on insurance and superannuation.

This may be an ideal time for you to take a lead on organising a national debate on the matter.
We need to think and discuss, as a nation, how we want to legislate for and have guidelines around DNA issues.

FYI, below is a media release and a backgrounder, along with reference to a research paper we commissioned (with the ANU Law School) in 2007-8.

We would be happy to be involved in any further discussions on the matter.

Yours sincerely,

Kristine Klugman, President

9 Sept 2009


1.  Media Release:

Australians’ DNA needs safeguarding in legislation

There should be no discrimination in Australia on genetic grounds, Civil Liberties Australia says.

People should not be prejudiced in seeking employment, or insurance, on the basis of their DNA.

Police forces should not routinely take DNA, unless a serious crime is alleged. Police should not take DNA from children.

There should be no DNA database collected in Australia if the information is not given voluntarily, or for purposes of serious crime detection.

A 2009 study in the Medical Journal of Australia highlights the risks of genetic discrimination according to CLA.

“Discrimination on genetic grounds is equally as wrong as other forms of discrimination, and measures should be taken to ensure that job-seekers are not required to submit to DNA testing,” CLA CEO, Bill Rowlings, said.

The Australian Law Reform Commissions 2003 report into genetic data and privacy Essentially Yours: The Protection of Human Genetic Information in Australia made several recommendations to the Australian Government to strengthen the privacy obligations surrounding genetic data but more could still be done. Basically, the voluntary provision of information was a core of the recommendations.

“At the moment an employer could require a new or potential employee to provide a DNA sample,” said Tim Vines, CLA’s media spokesperson. “How can it be free consent if you don’t get a job unless you comply?”.

CLA has called on the Government to strengthen measures protecting employee’s rights and to introduce laws making it an offence for an employer to demand an employee’s genetic profile or to punish a worker who refuses.

CLA also believes there should be national laws protecting people’s rights to their own genetic data, and to prevent police having access to DNA samples or information without a warrant or a clear allegation of a person’s involvement in a serious crime.


BACKGROUND STATEMENT:

by Civil Liberties Australia – September 2009

Genetic-testing, DNA and right to personal information

The mapping of the human genome remains a landmark in international research with the potential to revolutionise our understanding of illness and human biology. Genetic diagnostic techniques have already been combined with targeted drug-therapies for breast cancer, and future therapeutics are likely to incorporate genetic testing to set the maximum tolerable dose and reduce adverse side-effects.

Pre- and ante-natal genetic testing provides a mechanism for parents and children to prepare for possible illnesses and conditions; and even, where appropriate, seek what has been termed ‘genetic counselling’ where inheritable, but incurable, conditions are predicted.

While the potential health benefits of genetic research are profound, Civil Liberties Australia (CLA) suggests that such technologies heighten the risk for employment and insurance discrimination, and for breaches of privacy by government bureaucrats and police services. Moreover, the present understanding of human genetics is limited, and a genetic predisposition to a condition or illness is no guarantee that a condition or illness will ever develop.

Under the International Declaration on Genetic Data, an individual must give free and informed consent to the collection, processing, use and storage of genetic data. The right to consent (or to withdraw or to refuse consent) has been enshrined in international law since the Doctor’s Trial at Nuremberg following the end of the Second World War. The right to free informed consent, contained in the Helsinki Declaration has been adopted by the World Health Organisation as the golden thread for patient and individual rights in regards to matters of health and bodily inviolability.

But what right does an individual have to confidentiality of their genetic data? Can an insurance company deny health cover or life insurance on the basis of a genetic test and can an employer require a DNA sample as a condition of employment?

Under the law in Australia, an insurance company is unable to require a genetic test as a condition of insurance. However, were a person has had a genetic test, they are obliged to inform the insurer of that fact and what the outcomes of the test were. This has already affected the number of volunteers for medical research. A recent study published in the September 2009 issue of the Medical Journal of Australia found that half of the study’s participants were unwilling to proceed with a genetic test once informed of the impact it could have on their future health insurance.

In this case the participants could withdraw their consent to testing, but what of babies who are tested by their concerned parents at an early age? Will they be forced to disclose their genetic profile when they apply for private health cover later in life, even though they may have had no say in the earlier decision? Fortunately, in Australia. health cover is universal whereas such genetic discrimination would have  life-and-death consequences in the United States, where 43 million adults are already without health insurance.

CLA is opposed to any moves towards a mandatory scheme for genetic testing where the results are used to determine eligibility for health or life insurance. Insurers have stated that they refuse cover to no more than 10 Australians each year on the basis of their genetic profile alone – CLA believes that the Government should follow the lead of the UK and propose a voluntary moratorium on the use of genetic data by insurers, or the USA and introduce specific legislation protecting people.

The greatest risk appears to arise where a DNA sample is a mandatory condition of employment. A potential employee and employer form an unequal power relationship – with the power firmly in the employer’s hands. How can an individual provide free consent where refusal to provide a DNA sample will jeopardise their application for a job?

CLA proposes that the Government introduce a new offence of requesting a genetic sample or record of previous genetic testing as a condition of employment. Moreover, privacy principles should be strengthened so that employers cannot source a sample from a previous employer or other agency.

Discrimination on the basis of an individual’s genome should be considered the same as all other forms of discrimination. Indeed, it would render laws such as the Disability Discrimination Act irrelevant if an employer, or service provider, could instead discriminate on the basis that an individual’s genetics predisposed them to a certain condition.

CLA recommends that the Government also legislates to prohibit discrimination on the basis of a genetic test.

All forms of discrimination are abhorrent to notions of equality but discrimination on the basis of a person’s genetic profile punishes an individual for something which has not (and may not) ever occur.

Finally, a person’s genetic data is private and sensitive information and measures need to be taken to prohibit unauthorised access to that data. Information provided to insurance agencies should not be accessible to law enforcement bodies without the free and informed consent of the individual in question.

DNA material should only be taken by law enforcement authorities from people alleged to have committed a serious offence. The samples or processed data should only be retained if the person is convicted. The samples and any information processed from them should be destroyed, and the person notified formally of the destruction, if charges are subsequently dropped or the person is acquitted.

No DNA sampling of children by law enforcement bodies should be permitted in Australia, unless the child is accused of a serious offence.

Any DNA samples taken for emergency use or tracking/tracing purposes should be destroyed once the purpose for which they were taken has been completed.

It is likely that the health benefits from genetic testing and research will be immense. However, it is important to remember that, like all medical matters, genetic data is personal and sensitive information.  Free and informed consent of the individual must be obtained before DNA samples are obtained and a clean genetic profile should not be a pre-condition to employment.

A person should not be obliged to provide DNA – or any other samples – based on a presumption of non-innocence (that is, the sample is required to exclude a person from suspicion).

– Tim Vines, CLA media spokesperson, September 2009

Basic information for this statement is taken from a 2008 research paper by Karlie Brown, completed under a joint Law internship program involving Civil Liberties Australia (CLA) and the Australian National University (ANU): http://www.cla.asn.au/Article/080508rptDNAkb.pdf
See also: US legislates, why not Australia? – a statement by CLA in May 2008
https://www.cla.asn.au/News/dna-us-legislates-why-not-australia/

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