Women in the super network

Speech by Moira Scollay, Acting
Sex Discrimination Commissioner, at the Hyatt Hotel, Canberra, 12 February
1998

Thank you for asking
me to speak at your lunch time seminar. I have been excited by the prospect
- as you may be aware, I am doing two jobs at the moment at the Human
Rights and Equal Opportunity Commission. One is the job of Privacy Commissioner,
my usual job, and the other is acting as the Sex Discrimination Commissioner
pending a Government decision about a permanent appointment to that position.
Working on these two radically different subject areas is quite fascinating.
Every now and again the two subject areas cross paths and I am permitted
to view a given subject from two distinct perspectives. I find that challenging
and broadening. What is particularly exciting about today is that there
are some links between the issues that I am going to talk about which
allow me to make remarks from the two differing perspectives.

First I would like
to talk about the subject which is probably dearest to your hearts, which
is superannuation, and specifically about sex discrimination issues. That
discussion will lead us into a discussion of genetic testing, which is
becoming increasingly relevant in insurance and superannuation. There
are discrimination issues to be considered as well as major privacy ones.

Superannuation and
discrimination

There are issues
relating to superannuation which have captured the attention of successive
Sex Discrimination Commissioners since before the sex discrimination legislation
was first enacted in 1984, and I would like to draw your attention to
some of these.

Introduction and
background

The introduction
of compulsory contributory superannuation and the policy shift towards
choice in super funds by the current federal government has focused attention
on superannuation as never before. From the mid 1980s onward, superannuation
has gone from being the prerogative of a small number of workers to becoming
a compulsory retirement income strategy for the approximately 80 per cent
of workers who earn more than $900 per month.

The policy shift
towards self-funded retirement has always held problems for women. Intermittent
paid work combined with unpaid caring work, and lower wages on average
than men, has always posed problems for women’s economic independence.
The lower lifetime earnings of women reduce their capacity to save sufficient
income for superannuation to provide for a dignified standard of living
in retirement.1  Older women who have historically not had
access to superannuation at all are likely to be in a particularly disadvantaged
position. The maintenance of social security for the elderly is crucial
if women are not to be disadvantaged by the use of superannuation as a
retirement income vehicle.

Much of the current
approach to superannuation is still structured around an image of an employee
as a male breadwinner who works for one employer in full time employment
for a continuous period of 30 to 40 years and then moves on to a life
of fishing and golf. It’s time to adjust this image. Superannuation
is an income related system with tax concessions favouring long-term,
high income earners. It is a system that has never been particularly suited
to women’s lives.

The Sex Discrimination
Unit has been concerned about discrimination in relation to superannuation
for many years. In 1993, the Sex Discrimination Commissioner published
Guidelines for the Avoidance of Discrimination on the Grounds of Sex,
Marital Status or Pregnancy in Relation to Superannuation. These guidelines
were supplemented by the publication of further guidelines in 1995. These
latter guidelines were produced with the assistance of a taskforce on
superannuation formed by the Sex Discrimination Commissioner including
key industry and government representatives.

Superannuation and
discrimination legislation

Until 1993, the superannuation
industry enjoyed a blanket exemption from anti-discrimination legislation.
The passage of the Disability Discrimination Act in 1993 brought about
limited exemptions, and changes to the Sex Discrimination Act (SDA) which
came into effect in July 1994 have limited the freedom to discriminate
once enjoyed by the industry.

The exemptions in
the SDA currently enjoyed by the super industry were, when legislated,
intended to be temporary. Discussions pursued by my predecessor, Sue Walpole,
showed a willingness by the superannuation industry to consider issues
of discrimination with a view to the eventual removal of exemptions. The
pace has moved slowly - Sue used to say it was reminiscent of St Augustine’s
plea to God to make him holy ... but not yet.

Discrimination

A woman cannot be
discriminated against in superannuation on the basis of sex or marital
status ... unless:

• the discrimination
  is based on data about the average life expectancy of women and men
  as groups (reasonably based actuarial or statistical data);2
• she wants to provide
  her superannuation benefits to dependents other than a spouse or children
  (perhaps a sibling or same sex partner);3
• the discrimination
  is based on differences in the position of men and women in the workforce
  which disadvantage women in relation to preservation of their benefits,
  vesting of employers’ contributions, or the portability of benefits
  from one job to another;4
• the discriminatory
  provisions were already in operation on July 1 1994 and members have
  been offered the option to transfer to a non-discriminatory scheme,
  or an exemption has been granted from the requirement to make the offer;
  or
• the discrimination
  is in existing super funds, where an option to move to a non-discriminatory
  fund has been made.5

The provisions in
the SDA relating to superannuation allow both direct and indirect discrimination
in the cases outlined above. Direct discrimination occurs when people
are treated less favourably on the basis of sex, marital status, pregnancy
or potential pregnancy.6  Examples of direct discrimination
in super, contrary to the objects of the SDA, include:

• lower death and
  disability coverage for women;
• different retirement
  provisions for women;
• no payment of
  benefit to a woman’s surviving spouse, or on proving dependency;
• marriage/dowry
  benefits; and
• differential provisions
  regarding desertion, and imprisonment.7

Some of these, eg,
dowry benefits, actually give women a benefit which is not available to
men. Early retirement provisions for women, which may be beneficial to
women, may also be a benefit which women cannot afford.

Indirect discrimination
occurs when an unequal result is produced by the identical treatment of
people. Indirect discrimination is concerned with the effect of a given
policy or practice, not its form. Examples of indirect discrimination
in super include:

• no or little entitlement
  to benefits if the employee leaves before retirement;
• requirements for
  very long periods of employment for vesting;
• reduced benefit
  to a surviving or non-contributing spouse;
• superannuation
  contributions sometimes cannot be continued during maternity leave and
  periods of workforce absence for child rearing;
• 19.4 per cent
  of female employees earn less than $800 per month. Another 11.7 per
  cent of female employees earn less than $1,200 per month. Most of these
  fall below the $900 per month cut off for compulsory employment-related
  superannuation proposed by the federal Government;8
• tax concessions
  in the superannuation system are of little benefit to low income earners
  and reduce the tax pool for services needed and used more by lower income
  earners - disproportionately women;9 and
• failure to extend
  pro rata benefits, for example, disability cover, to part timers.10

Let’s look at
some of the exemptions in the SDA which allow continuing discrimination
in super.

Vesting, portability
and preservation of benefits

Vesting
11

Vesting is the key area in discriminating between the final benefits
received by men and women. While the Superannuation Guarantee legislation
provides for immediate 100 per cent vesting of employer contributions,
there remain employer-sponsored funds in public and corporate sectors
where long vesting periods persist.

While funds allow
for no vesting of the employers’ contributions until certain length
of service requirements have been fulfilled, women with broken work patterns
due to family or carer responsibilities will pay a high price. In recent
years there have been improvements in the level of vesting and fully vested
employer contributions are the way of the future.

Removal of the exemption
for indirect discrimination in vesting would leave superannuation funds
open to a complaint of indirect discrimination, in which case a respondent
would need to establish that the discrimination was ‘reasonable’
under the SDA.

Portability

Many women work in short term, casual employment for a variety
of employers and have difficulty consolidating several small amounts of
superannuation. While a number of industry funds make it easier to transfer
accrued benefits to another employer when changing jobs and do not charge
fees, that has not been the practice in most private schemes. I welcome
the federal Government’s intention to require that by 2000 all employees
in accumulation funds be able to move their benefits between funds. Increased
portability will assist men as well, of course. It is a logical and long
overdue response to the changing workforce participation patterns of all
Australians.

Preservation

The preservation of benefits has raised problems for women who
tend to have small amounts in one or a number of different funds which
are eaten away by administrative charges before the preservation requirements
are met. To a large extent, the Government’s initiatives to deal
with these problems such as facilitating transfer and/or amalgamation
of benefits and by providing the option to opt out of super have obviated
the need for the exemption by dealing with the problem which led to the
indirect discrimination. It is unlikely that indirect discrimination in
preservation will be an issue in the future.

Use of actuarial
data

Sex is used to differentiate
risk groups in superannuation and insurance because according to the industry,
statistics indicate that women live longer than men and have different
rates of disability. S41A(1) of the SDA provides an exemption for discrimination
on the grounds of sex and marital status in superannuation fund conditions
where the discrimination is based on actuarial and statistical data from
a source on which it is reasonable for the discriminator to rely and where
the discrimination is reasonable having regard to the data.

Statistics used generally
fall into three categories:

1. Statistics used
   to predict mortality risk
2. Statistics used
   to predict disability risk
3. Statistics used
   to predict the rate of resignation from employment or early retirement.

An example of how
actuarial data are used is in annuities. Women, who pay the same for annuities
as men, are paid lower benefits, on the basis that women live longer -
although, of course, statistical generalisations do not predict how long
any individual man or woman might live. A woman investing $50,000 and
retiring at age 59 would get $500 less than a man investing the same amount
in the first year; $6,000 less over ten years, and $16,000 less over 20
years.12

Interestingly, smoking,
diet and exercise levels, which can be linked to particular diseases more
associated with men than women, have a major impact on mortality and disability
rates but are not usually taken into account in the superannuation context.
It could be suggested that they are difficult to monitor in an environment
where individual health evidence is rarely monitored. It would seem that
age and sex differentials continue to be convenient ways to keep costs
down in superannuation, insurance and annuities. It seems inequitable
to target the female sex to the exclusion of other factors which may be
of equal or greater significance to longevity.

The Senate Select
Committee’s Seventeenth report Super and Broken Work Patterns
discussed the possibility of removing sex based distinctions in annuity
rates. The Committee considered that insurers could, instead of relying
on gender-based actuarial or other discriminatory data, establish annuities
geared toward particular needs of individuals in the same way that they
market any other financial service. It agreed with submissions noting
that the age pension does not vary according to sex and that factors such
as opportunity costs foregone by women through having a smaller annual
return outweighed the proposition that taking account of life expectancy
produces equal returns.13

Research is being
undertaken into the suitability of sex as a rating factor for mortality
and disability in the superannuation and insurance contexts by Association
of Superannuation Funds of Australia (ASFA) and the Institute of Actuaries
of Australia (IAA). HREOC has been greatly assisted by advice from the
IAA about the use of actuarial and statistical data and the rationale
for their use. Only broad-based, up to date research, relevant to the
Australian situation will provide the basis for deciding whether it is
reasonable to continue to rely on sex-based actuarial and statistical
data to justify different treatment of men and women in super and insurance.

Complaints

Despite the exemptions
on superannuation, there is scope for complaint under the Sex Discrimination
Act. We have had about 25 complaints about superannuation over the last
three years. Of these, most have been withdrawn, declined or settled.
Some seven complaints have gone to public hearing and determination and
as yet, none has been upheld. One of these cases has been appealed to
the federal court which has remitted the complaint to HREOC on the basis
that the Commission’s finding that superannuation was not a ‘service’
under s22 of the SDA was erroneous.14  Another matter to watch
concerns whether the ten year rule indirectly discriminates against women.
The ‘ten year rule’ in the Commonwealth Public Sector Scheme
provides that the employer only matches the amount of the employee’s
contribution after ten years’ service is completed. The complainant
argues that given broken working patterns of women, women are less likely
to reach that period as men and even if they do, they are then unable
to access the increased employer contributions for so long a period as
men.

Current government
initiatives

As part of the 1997-98
federal budget, the Treasurer, the Hon Peter Costello, announced the Government’s
intention to provide for greater choice in superannuation for employees.
Legislation has been drafted which requires employers to provide a choice
of superannuation funds to new employees from 1 July 1998, with existing
employees also being given choice by 1 July 2000.

The Treasurer also
announced changes in relation to superannuation for low income earners.
Legislation is to be introduced allowing employees earning between $450
and $900 a month to choose to opt out of the superannuation system and
receive superannuation guarantee charges as immediate wages. The majority
of the employees who fall within this category are women in part-time
or casual work. Those workers who do opt out will lose the Government
matching contribution (3%) and face effective higher tax rates than those
workers who earn above $900 a month or those who opt to stay in super.
Those workers who decide to opt out need to take into account their higher
tax rates and loss of the Government contribution.

The Treasurer’s
changes are being complemented by changes to the award superannuation
system initiated by the Minister for Workplace Relations and Small Business,
the Hon Peter Reith, who introduced legislation in December 1997 to remove
superannuation as one of the twenty allowable matters under S89A of the
Workplace Relations Act 1996. Passage of these amendments will
remove superannuation from federal awards and prevent the Australian Industrial
Relations Commission (AIRC) from dealing with disputes about superannuation
by arbitration.

The federal Government’s
initiatives are intended to free up the administrative burden of super
on employers. The provision of greater choice for individual workers in
superannuation is concomitant with the responsibility of making an informed
choice. Given the concerns of discrimination in the administration of
superannuation schemes, and the extraordinary complexity of those issues
and of the schemes themselves, there is a major task ahead in informing
women as to the terms of schemes and what they should look for in choosing
a scheme, or, for low-income women, in deciding whether to opt out.

Work in progress

In preparation for
the coming legislation I will be exploring what the Government and superannuation
industry are doing to promote understanding among women of the new arrangements.
If the information available does not fully meet women’s needs I
intend to provide supplementary advice in the form of a brochure or short
booklet on superannuation issues, to be timed with the passage of the
legislative amendments.

The Sex Discrimination
Unit has prepared three draft discussion papers on the current exemptions
for superannuation under the SDA. Further work needs to be done on the
papers in the light of the federal Government’s superannuation reforms,
after which they will be issued to industry organisations as a contribution
to the debate and with a view to achieving industry commitment to removal
of the exemptions. The papers as they stand deal with:

• the use of actuarial
  and statistical data on mortality and disability;
• issues of vesting,
  portability and preservation; and
• conditions on
  death and disability benefits, particularly in relation to payments
  to people who are not the spouse or child of a member of the scheme.

I would like to spell
out my goals for furthering the objectives of the SDA in relation to superannuation:

• I would like superannuation
  funds voluntarily to comply with the objects of the Sex Discrimination
  Act;
• I would like to
  see removal of the current exemptions in relation to the operation of
  superannuation schemes, and will continue the negotiations with industry;
• I want to ensure
  that consumers, especially women, support those superannuation products
  that are non-discriminatory; and
• I think greater
  flexibility in the use of superannuation as an income support option
  is important and will advocate the continuation of other forms of income
  support. Ultimately we need a balanced approach to promoting superannuation
  as self-funded retirement income in tandem with a government infrastructure
  which supports those who are unable to achieve financial independence
  through paid employment.

Genetic testing
and sex discrimination

I spoke earlier about
the use of actuarial data and sex discrimination. This leads quite neatly
to a discussion about discrimination based on the results of genetic testing,
which is becoming a big issue in the insurance and superannuation industries,
and gives me the opportunity to explore from a sex discrimination perspective
and a privacy perspective.

It will fall to me
as the Sex Discrimination Commissioner, or my successor, to evaluate in
the long term the application of the SDA to the issues surrounding genetic
testing. My focus on genetic testing and DNA has to date been from the
Privacy perspective, but when I put on my Sex hat I can begin to see what
some of the issues might be in store in the future from a women’s
perspective.

The discovery of
DNA has dramatically changed the world of medicine, both in the treatment
and diagnosis of many diseases. DNA research has been internationally
organised through the Human Genome Project, a concerted international
research effort to map and sequence the approximately 3 billion nucleotide
bases comprising the estimated 50,000-80,000 genes on the human chromosomes.
The ultimate goal is to find all the genes in the DNA sequence and develop
ways to use this information in medicine. Many disease-causing genes have
been isolated, and a growing number of tests are now available to detect
them. Supporters of the quest for knowledge point to the invaluable new
tool for the diagnosis of genetically inherited disease. Critics argue
that science is opening Pandora’s box, spilling out a new form of
discrimination, one based upon our genes.

There is already
evidence from overseas of genetic discrimination occurring in a variety
of settings, including discrimination in the contexts of employment and
insurance. The advantages to an employer include the opportunity, should
it be legal, to screen out job applicants on the basis that they may one
day suffer from a particular disease.

The extent to which
the capacity for genetic testing in the future will affect women differentially
will, I think, be based on a number of factors. First, the increasing
scientific emphasis on genetics as an explanatory tool for human disease
may in the future de-emphasise social, environmental and psychological
explanations. Dr James Dewey, who shared a Nobel Prize for deciphering
the structure of DNA and who now directs the National Center for Human
Genome Research, claimed that ‘virtually all human afflictions, from
cancer to psychological disorders and susceptibility to infection, are
rooted in our genes’.15  Genetic explanations hold that
a range of identity characteristics are determined and fixed.

One of the basic
tenets of anti-discrimination laws is the idea that people should not
be treated less favourably on the grounds of characteristics imputed to
their race, sex, disability or other particulars. The use of genetics
to support a deterministic view of identity can, as has been demonstrated
in history, be harnessed to support simplistic and stereotypical understandings
in human identity. In a social and economic context in which women, blacks
and people with disabilities come off second best, categorisation of everything
from PMT to mental illness as predestined, testable and open to social
abuse is something we as a community need to debate the implications of.
The danger lies not in genetic technology itself but in the belief that
genetic differences are real, biological and neutral grounds for different
treatment. Under the Sex Discrimination Act, sex discrimination
may well be considered ‘reasonably based’ if genetic evidence
can be provided in support of it.

This is pertinent
in the insurance and superannuation industries. Opportunities for differential
treatment of males and females in these industries, made possible by the
use of actuarial data, are used most frequently in determining individual
life insurance cover, the death and disability components of non-compulsory
superannuation funds and, most often, in the calculation of annuities.
Any cover which is based on a risk assessment of an individual for the
calculation of premiums or benefits results in differential treatment
of those individuals. Known demographic sex life-span differences have
historically provided the basis for discrimination in the differential
treatment of males and females. Where the use of actuarial or statistical
data is reasonably based, it is exempt from the discrimination provisions
of the Act.

Over the last 20
or 30 years, internationally, the collection of actuarial and medical
information on individuals has been getting more sophisticated. Modern
collection of more detailed information about life-style or occupation,
for instance, through a range of methods, means that it is now possible
to make greater separations within actuarial data. We now know who is
at risk; there are some occupations that are more dangerous than others
and that there are genetic diseases which will shorten life span and lead
to high costs of care. We now know, for example, that five per cent of
women have a genetic predisposition to a particular form of breast cancer,
detectable through genetic testing, and 85 per cent of those women will
go on to develop the cancer. The debate about how the insurance and superannuation
industry will handle these questions is well-developed internationally
and developing in Australia. It remains to be seen what use will be made
of information about diseases specific to women, but if actuarial data
to date gives us any indication, we may be in for a rough ride.

In my view it will
be very difficult to turn the clock back. The potential for predictive
accuracy about the future onset of an incurable genetic condition will
be hard for the commercially driven insurance industry to resist. The
Life, Investment and Superannuation Association of Australia (LISA), Australia’s
peak life insurance and superannuation organisation, has stimulated debate
by preparing in 1996 a Position Paper on Genetic Testing and Life Insurance.
The paper defended the right of insurance companies to have access to
existing genetic test results, while stopping short of requiring clients
to undergo testing, at this stage.

The second way in
which genetic testing will affect women differentially is increasingly
in the focus on the foetus in genetic technology. Any genetic information
about DNA structures can only be manipulated or altered at the zygote
and foetal stages of development, placing women, as the bearers of children,
in a position of having to respond to genetic information about the foetus
they are carrying in a way that is socially prescribed. To some extent
this is already happening. These days women in Australia over 35 who do
not have tests in pregnancy for spina bifida, Downs Syndrome and other
abnormalities affecting the foetus are exceptions. Where such tests detect
abnormalities, the option for termination usually exists. There are cases
from the US of women who went ahead with pregnancy knowing that they had
genetic conditions which posed a risk for their children. The public disapproval
towards them and subsequent discrimination they suffered reflect thinking
that people with mutations associated with diseases in their genes should
be eliminated.16

In Australia today
there is still involuntary sterilisation of young women with intellectual
disabilities; we see here an applied notion of genetic screening and a
degree of public acceptance of this. In China the one-child policy of
family planning has meant that some families go to extremes to ensure
that their child quota is male, including abortion of female foetuses.
According to last week’s Sydney Morning Herald’s Good Weekend
magazine, there are nearly 40 million more males than females in China
today.

Finally, the diseases
for which it will be possible to test. Currently, DNA tests are available
for single gene diseases such as Huntington’s disease which, although
ultimately fatal, are rare. DNA screening tests for more common conditions
such as heart disease, Alzheimer’s, breast cancer, diabetes and rheumatoid
arthritis, all of which have genetic susceptibilities, are being developed
and will probably become commercially available within ten years.

Currently there are
some female specific, or female predominant, diseases for which tests
are already available or are likely to be available soon. These include
a particular form of breast cancer, which I have mentioned and some autoimmune
diseases such as rheumatoid arthritis which occur mainly in women. There
are likely to be lots of others out of the 4,000 or so genetically susceptible
diseases that are expected at some time to be testable, that I don’t
know about yet.

Genetic privacy

Let me conclude with
some remarks about genetic privacy.

The collection and
use of genetic information has long been a particularly challenging subject
for Privacy and Data Protection Commissioners around the world. Many of
my counterparts have written on the subject. In 1996 my office released
an information paper The Privacy Implications of Genetics Testing.
For the most part the discussion has been in terms of possibilities.
However, advances in technology alongside developments in the science
of biology and genetics have brought a certain cold reality. The progress
of the Human Genome project certainly places a greater urgency on resolving
the myriad of associated moral and ethical issues, privacy being one of
them. In no way do I wish to stem the contribution of genetics to scientific
and medical knowledge. However I am very aware that these can be used
as extremely powerful and seductive arguments to justify intrusions into
what I consider to be fundamental rights. My concern as a Commissioner
of the Human Rights & Equal Opportunity Commission is to ensure that
such progress sits alongside consideration of these rights.

One such right is
the right to genetic privacy.

I am encouraged to
see that at an international level, there is strong concern to ensure
that the ethical and legal implications of such scientific progress be
enshrined in international instruments. Our own the Hon. Justice Michael
Kirby, a strong advocate for privacy and human rights, is currently involved
in a number of international bodies on the issue of genetic privacy; in
particular the International Bioethics Committee of UNESCO. At a recent
Privacy Issues Forum held in New Zealand, Justice Kirby reported on the
progress of the group which has prepared a Preliminary Draft for a
Universal Declaration on the Human Genome and Human Rights. The draft,
which covers a whole range of issues, is expected to give rise to an international
treaty with binding obligations. Of particular interest are a number of
draft articles dealing with the rights of persons who are the subject
of genetic testing, including

Article 7

No one may be subjected to discrimination based on genetic characteristics
that is intended to diminish or has the effect of diminishing human
dignity or impairing the right to be treated equally.

Article 8

Genetic data associated with a named person and stored or processed
for the purpose of research or any other purpose must be held confidential
and protected against disclosure to third parties.

These articles, though
still in draft form, formalise the importance of genetic privacy as a
central human right and recognise the very real potential for discrimination
that can result through misuse of such information.

What do I mean by
privacy?

The notion of protecting
privacy as a fundamental human right is reflected in a number of international
instruments, most notably in the International Covenant on Civil and
Political Rights.17  Most western industrialised countries,
including Australia, have enacted laws to protect the privacy of information
of their citizens. While these laws mostly provide protection where personal
information is in the hands of the state, in some countries their privacy
laws extend to the private sector.

A common basis to
these laws is a set of fair information handling principles which have
been set out by the OECD in its Guidelines governing the protection
of privacy and transborder flows of personal data (1980). Protecting
privacy is more than just guaranteeing confidentiality. Allowing for exceptions
to address legitimate business and public interests at issue, fair and
responsible handling of personal information means:

• Collecting only
  necessary information related to the purpose for which it is collected;
• Informing people
  about why their personal information is being collected and what it
  is to be used for;
• Allowing people
  to access information about them which has been collected, and to correct
  it if it is inaccurate or out-of-date;
• Making sure that
  the information is securely held and cannot be tampered with, stolen
  or improperly used; and
• Limiting the use
  and disclosure of personal information for other purposes without the
  consent of the person affected.

Is there an absolute
right to genetic privacy?

Genetic information
poses new challenges for the way we think about protecting privacy. A
1992 Canadian report asserted that "persons should have a reasonable
expectation of genetic privacy".18  In particular no
person should be subject to mandatory testing which would result in a
loss of autonomy and fundamental freedoms.

Yet some commentators
question the extent of such expectations. Does the individual have an
absolute right to genetic privacy? Dr Tom Wilkie an author and science
journalist noted that fundamental laws of nature argue against there being
true genetic privacy. The mere fact that we share a percentage of our
genes with family members, holds implications for individual rights to
that knowledge. He says "... if I wish to know what is written in
my own genes, this private knowledge of mine also constitutes partial
knowledge of the genes of other individuals, who may be quite remote from
me."19

Traditional application
of privacy principles have focussed on the privacy rights of the individual.
The view has been that I, as the person providing the information about
myself, am also the one who may be adversely affected should anyone else
misuse my information. The concept of anyone else having a proprietary
interest in information about the individual has not ordinarily been addressed
by privacy principles.

Family members have
traditionally been viewed as third parties to whom access to an individual’s
information, in accordance with privacy principles, should only be granted
with the consent of that individual. However, that the context of genetic
testing accords the family a different status is a policy now recognised
by bodies such as the Ethics Committees of the Human Genome Organisation
(HUGO), the World Medical Association and Expert Group of the World Health
Organisation. This shift recognises the concept of the family in genetic
group as being the entity with a right to privacy rather than the individual.
The view is "that genetic information should be shared, as a form
of familial property, amongst family members who have a legitimate interest
in genetic information that affects them."20

To know or not to
know ...

Genetic testing raises
another new concept to traditional thinking about privacy - the right
‘not to know’. The rights enshrined in privacy principles are
premised on the view that the individual has a right to full access to
information about them and corresponding policies of full disclosure by
record-keepers. Particularly in relation to sensitive medical information,
privacy advocates have been keen to ensure that the right to access medical
information be enshrined in legislation. The test case Breen v Williams
(1996), though unsuccessful in the High Court, sought to establish a common
law right of access to medical records.

In some cases the
individual who is the subject of genetic testing may not wish to know
that they carry a gene which may lead to the development of a serious
or fatal illness. The ability for genetic advances to predict late-onset
disorders means that "many healthy people live under the sword of
Damocles - knowing they are at enhanced risk for later illnesses such
as cancer or Alzheimer’s disease."21   For this
reason, the ability for the individual being able to exercise informed
choice in deciding whether to be informed about genetic results has been
recognised by the HUGO International Ethics Committee.

The use of genetic
information in a commercial context

As mentioned earlier,
the availability of genetic data is of obvious commercial interest to
third parties such as insurers and employers, and herein lies the major
concern for policy makers. As the technology grows more sophisticated,
and the industries move to embrace genetic testing in their risk assessment
procedures the potential for discrimination and denial of products and
services will become a dangerous reality.

I recognise that
it is a difficult argument to sustain in principle, that genetic data
should be excluded from risk assessment in insurance. Already questions
that seek for example information about your family’s history of
heart disease are a crude form of checking genetic predisposition. However
I believe that the introduction of a more precise form of establishing
genetic predisposition in the insurance industry tips the balance away
from an element of risk that is fair to both the individual and the insurer.
The tragic outcome is one that Dr Wilkie speaks of, that "[t]hose
who have already been discriminated against in the shuffling of the genes
passed on to them by their parents would be subject to a second, social
and economic discrimination. They could be denied medical insurance, yet
they are exactly the people who are going to need as much medical attention
as they can get and thus need to be able to pay for it. They could be
denied the ability to buy a house, if the loan cannot be secured against
a life policy; they could be denied the opportunity of saving up for their
own personal pension."22

As a final point,
an important element in this whole discussion will be the consent of the
individual. International privacy principles say that information should
not be disclosed to third parties without the consent of the individual.
I am concerned that the lack of legislative controls in industries that
seek to use genetic information leaves individuals vulnerable to pressure
to "consent". This is indeed the case in Australia, where the
federal Privacy Act 1988 which I administer, covers only the public
sector and the credit industry. As such there is no general extension
to the private sector. As some of you may be aware, I am currently embarked
on a process looking at establishing national privacy standards consistent
with international best practice to the private sector. To this end, I
have developed a set of privacy principles in consultation with a whole
range of stakeholders including businesses, consumer groups and Government
representatives. I will be launching the principles shortly.

Conclusion

In conclusion, it
is not often that I get to combine "sex" with privacy. Today’s
invitation has provided me with an interesting opportunity to look at
the moral and ethical sides of an issue which I have no doubt will be
increasingly dominating your industry in the near future. I trust that,
alongside the benefits that genetics testing can bring to your industry,
you take into account the associated costs to fundamental human rights
and strive to achieve a balance between the two.

Reference notes

1. Brown, C. The
Distribution of Private Sector Superannuation Assets by Gender, Age and
Salary of Members, Conference Paper 94/2, Retirement Income Modelling
Task Force, 1994, pp3-6. The Task Force revealed that on average, male
members of superannuation funds had superannuation assets 2.7 times those
of women. On average, women superannuation fund members of retirement
age (over 55) had less than half the superannuation assets of their male
counterparts - in the range $21,000 to $31,000 compared to $50,000 to
$67,000. The Task Force’s research is used frequently in relevant
literature including in the federal Government’s policy statement
on superannuation, Super For All - Security and Flexibility in Retirement,
‘Superannuation for Women’, p11.

2. See Sex Discrimination
Act 1984 (SDA) s41A(1)(b)(i)(A) which exempts discrimination where:

1. the superannuation
   fund conditions include a provision that:
   
   (A) is based on actuarial or statistical data from a source on which
   it is reasonable for the discriminator to rely.

3. See SDA s41A(1)(b)(ii)(A),
(B), (C) and (D) which exempt discrimination:

2. in the case of
   a member who has no spouse (whether legal or de facto) or has no child
   - the superannuation fund conditions:
   
   (A) do not provide for superannuation benefits in the event of the member’s
   death; or
   
   (B) provide for less generous superannuation benefits in the event of
   a member’s death; or
   
   (C) do not provide for superannuation benefits to someone other than
   the member in the event of the member’s physical or mental incapacity;
   or
   
   (D) provide for less generous superannuation benefits to someone other
   than the member in the event of the member’s physical or mental
   incapacity.

4. See SDA s41A(1)(b)(iii)(A),
(B), and (C) which exempt discrimination in cases when:

3. the superannuation
   fund conditions include a provision that relates to:
   
   (A) the vesting in members or other persons of benefits arising directly
   or indirectly from amounts contributed to the fund; or
   
   (B) the preservation of benefits arising directly or indirectly from
   amounts contributed to another superannuation fund; or
   
   (C) the portability of benefits arising directly or indirectly from
   amounts contributed to another superannuation fund.

5. s41B.

6. SDA ss5(1), 6(1),
7(1) respectively.

7. Superannuation
and the Sex Discrimination Act 1984 - Current Status and Future Directions,
AGPS, Canberra, 1994, p3.

8. ABS Catalogue
6306.0 Employee Earnings and Hours May 1996. Figures include:

                               
% of all Males    % of all Females    %
of all Persons

Under $800/month
         8.6                        
19.4                                
13.6

between $800 and

$1,200/month                 
4.5                        
11.7                                 
7.8

9. Superannuation
and the Sex Discrimination Act, op cit pp3-4.

10. A number of insurers
require that a minimum number of hours is worked before they will offer
disability cover.

11. Vesting determines
the length of service before retirement required before super benefits
include employer contributions.

12. Legal and General,
Annuity Presentation, 28 January 1994, quoted from, Superannuation
and the Sex Discrimination Act 1984 - Current Status and Future Directions,
HREOC, 1994 p9.

13. Seventeenth Report
of the Senate Select Committee on Superannuation, Super and Broken
Work Patterns, AGPS, Canberra, Nov 1995, pp80-84.

14. The case, between
the Australian Education Union and the State of Tasmania, is about the
‘buying back’ of prior years of discontinuous service for superannuation
purposes by female teachers on different terms from male teachers.

15. Mertz, B, &
Pines, M. eds Blazing a Genetic Trail, Bethesda, Howard Hughes
Medical Institute, 1991, p1

16. One person was
denied the right to adopt solely because she was at risk of Huntingdon’s
disease. Another couple wanted to go ahead with a pregnancy after the
foetus was tested positive for mutations associated with cystic fibrosis
although they already had one child with cystic fibrosis. The couple had
to threaten to take legal action to stop the withdrawal or limiting of
health care for the pregnancy, post partum and paediatric care by their
health insurance provider. Another example is on a television newswoman
who had ectrodactyle, a condition which results in the absence of some
terminal digits. When she chose to have a child despite the risk, she
was criticised for it by a Los Angeles talk show host.

17. The Universal
Declaration of Human Rights, Article 12; International Covenant on Civil
and Political Rights, Article 17.1; European Convention for the Protection
of Human Rights and Fundamental Freedoms, Article 8.

18. Privacy Commissioner
of Canada (1992) Genetic Testing and Privacy, Ontario; p.31.

19. Wilkie, Dr Tom
(1993) "Who should know what is written in my genes?" Talk given
at the XVTH International Conference of Data Protection and Privacy Commissioners,
Manchester, 28 September 1993.

20. Knoppers, B N
(1996) "Privacy, Confidentiality and Genetic Information" quoted
in Kirby, the Hon Justice Michael "Looking Backwards - Looking Forward"
paper delivered to Fourth Privacy Issues Forum, Auckland NZ, 10 July 1997.

21. "Whose body
is it anyway? The Weekend Australian Feb 7-8 1998, p.25.

22. Ibid,
p.10.

Last
updated 1 December 2001