Statistique, Développement et Droits de l‘Homme
Session C-Pa 8a
Balancing Privacy and the Requirements of
Social Statisticians in a Sceptical Society
Richard MADDEN
Margaret FISHER
Montreux, 4. – 8. 9. 2000
Statistique, Développement et Droits de l‘Homme
Balancing Privacy and the Requirements
Statisticians in a Sceptical Society
of
Social
Richard MADDEN
Director, Australian Institute of Health and Welfare
6A Traeger Court, Fern Hill Park
PO Box 570
2601 Canberra ACT, Australia
T. + 61 2 6244 1100 F. + 61 2 6244 1111
richard.madden@aihw.gov.au
Margaret FISHER
Executive Unit, Australian Institute of Health and Welfare
PO Box 570
2601 Canberra ACT, Australia
T. + 61 2 6244 1033 F. + 61 2 6244 1111
margaret.fisher@aihw.gov.au
ABSTRACT
Balancing Privacy and the Requirements of Social Statistician in a Sceptical Society
Statisticians value and protect privacy. Working under the UN’s Fundamental Principles of
Official Statistics, statisticians have an excellent record for protecting data provider’ privacy. Past
challenges will be explored, but now the main threat comes from the broader assault on privacy
posed by electronic record systems.
Today, opportunities to link data sets electronically abound. Citizens are nervous of the uses
of linkage, and do not readily distinguish statistical uses from more intrusive applications such as
credit rating and direct marketing.
Medical researchers have long had a privileged position in accessing identified data, based
on the 1964 Declaration of Helsinki by the World Medical Association. In Australia, such access is
governed by Human Research Ethics Committees.
The paper will address whether statisticians in fields of social sciences now need, and
should actively seek, similar arrangements to ensure continuing community confidence, and what
mechanisms may be available.
RESUME
Équilibre entre le respect de la sphère privée et les exigences des statistiques sociales dans
une société critique
Les statisticiens apprécient et protègent la sphère privée. Travaillant conformément aux
Principes fondamentaux pour la statistique officielle établis par l'ONU, les statisticiens jouissent
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d'une excellente réputation en matière de protection de la sphère privée de leurs fournisseurs de
données. On explore les difficultés rencontrées dans le passé, mais le principal souci provient
désormais de l'assaut à grande échelle lancé contre la sphère privée par les systèmes électroniques
d'enregistrement.
Il existe actuellement une foule de moyens de mettre en liaison des séries de données. Les
citoyens s'inquiètent des emplois de ces mises en communication et ne distinguent pas réellement
entre les usages à des fins statistiques et des emplois plus indiscrets ayant trait aux évaluations de
solvabilité et au marketing direct.
Les chercheurs médicaux bénéficient depuis longtemps, aux termes de la Déclaration
d’Helsinki formulée en 1964 par l'Association médicale mondiale, d'une position privilégiée en
matière d'accès aux données identifiées. En Australie, cet accès est régi par des Comités d'éthique
supervisant les recherches sur l'être humain.
L'auteur de l'article se demande si les statisticiens dans le domaine des sciences sociales
n'auraient pas besoin, et ne devraient pas activement rechercher, eux aussi, des arrangements
similaires afin de garantir le maintien de la confiance des collectivités, et quels mécanismes
pourraient être disponibles.
1. Introduction
An individual’s right to privacy is a fundamental human right. This is recognised in a number
of international instruments, in particular the International Covenant on Civil and Political Rights
(Article 17) and the OECD Guidelines on the Protection of Privacy and Transborder Flows of
Personal Data. (NHMRC, 2000) Statisticians acknowledge that “Individual data collected by
statistical agencies for statistical compilation, whether they refer to natural or legal persons, are to
be strictly confidential and used exclusively for statistical purposes. “(UNSC, 1994)
Statistics are fundamental in supporting a nation’s development and the human rights of its
people. Official statistical agencies, privileged as they are through the legislative protection of the
confidentiality of their data, have a responsibility to go as far as possible in using the information
they collect to describe social conditions for all stakeholders and citizens to use.
2. The Australian Environment
In Australia, the confidentiality of personal data collected in the Federal Government sector is
protected by the Privacy Act 1988 (Privacy Act), which incorporates the principles of the OECD
Guidelines. Australia, as a federal system, is comprised of a six States and two Territories. The
governments of these States and Territories have in some areas enacted privacy legislation to cover
their jurisdictions. This paper shall focus on activities at the federal level only.
A Bill to extend the provisions of the Privacy Act to the private sector is currently being
considered in the Australian Parliament. (Commonwealth of Australia, 2000) Interestingly, the Bill
contains special provisions regarding the treatment of personal health information.
Both the Privacy Act and the provisions to amend it provide for exemptions in the case of
personal information used for medical research. Section 95 (1) of the Privacy Act states “The
National Health and Medical Research Council may, with the approval of the (Privacy)
Commissioner, issue Guidelines for the protection of privacy in the conduct of medical research.” A
copy of the National Health and Medical Research Council (NHMRC) Guidelines under Section 95
of the Privacy Act 1988 (the Guidelines) is available at http://www.nhmrc.health.gov.au.
The NHMRC Guidelines argue that “the right to privacy is not an absolute right. In some
circumstances, it must be weighed against the equally justified rights of others and against matters
that benefit society as a whole.” (NHMRC, 1999) While medical research is vital, and has led the
way in developing best practice for using statistical data for research purposes, it is but one field of
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social research. Moreover, today linkages abound between medical research and research across
the social science disciplines, so a common approach is essential.
The NHMRC Guidelines list detailed procedures to be followed by researchers in order for
personal information to be lawfully used or released for medical research purposes. (The Privacy
Act defines medical research as including epidemiological research.) A fundamental requirement is
that the medical research on which the personal information is to be used has been approved by a
Human Research Ethics Committee for the particular purpose.
3. The AIHW Example
To demonstrate the effectiveness of the protection of privacy in health-related research, I will
now describe relevant practices in my own organisation.
The Australian Institute of Health and Welfare (AIHW) is an independent statutory authority
of the Australian Government. Its mission is “To improve the health and wellbeing of Australians,
we inform community discussion and decision making through national leadership in developing
and providing health and welfare statistics and information.” (AIHW, 1999)
The AIHW collaborates with the Australian Bureau of Statistics (ABS), Australia’s national
statistical agency, in its work. Both agencies provide their statistical services to Commonwealth and
State Governments. In the health and welfare sectors, ABS undertakes national population surveys,
and AIHW concentrates on statistics based on administrative data.
.In meeting its legislated function of producing health- and welfare-related statistics and
information, the AIHW follows the high standard set by the United Nations Principles of Official
Statistics of protecting the security of personal information. The Institute’s practices demonstrate a
good example of the effective application of the section 95 Guidelines.
The Institute has a responsibility under its legislation to support well-founded health research,
subject to the confidentiality provisions (section 29) of the Australian Institute of Health and
Welfare Act 1987 (AIHW Act). Section 5(1)(h) requires the Institute to “enable researchers to have
access to health-related information and statistics held by the Institute or by bodies or persons with
whom contracts or arrangements have been entered into by the Institute.” (AIHW, 1997)
Section 16(1) of the AIHW Act requires the Institute to appoint a Health Ethics Committee
whose major responsibility is to form an opinion as to the acceptability or otherwise, on ethical
grounds, of health-related activities of the Institute or bodies with which the Institute is associated.
Regulations require the Committee in fulfilling its functions to have regard to any relevant ethical
principles and standards formulated or adopted by the NHMRC (as prescribed by section 95 of the
Privacy Act). Following Ethics Committee consideration and clearance, researchers granted access
to identifiable data must sign an undertaking which binds them to the same legislated confidentiality
obligations (under section 29 of the AIHW Act) as apply to AIHW staff. Monitoring compliance
with the requirements of the undertaking is integral to the Ethics Committee process.
The AIHW supports the principle that “Official statistics provide an indispensable element in
the information system of a democratic society, serving the Government, the economy and the
public with data about the economic, demographic, social and environmental situation.”(UNSC,
1994). Information collected by the AIHW is used only for statistical and research purposes. The
framework of legislation, formal agreements, the requirements of its Board, and its policies and
practices guarantee the security of that information.
4. Potential Threats
I now want to focus on some potential threats to the current use of potentially identifiable
information for statistical purposes.
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Today, opportunities to link data sets electronically abound. Australia’s proposed new
national privacy legislation has been the catalyst for passionate debate about the security of
information. Citizens are nervous of the uses of linkage, and do not readily distinguish statistical
uses from more intrusive applications such as credit rating and direct marketing.
The AIHW is aware of the potential that such debate poses to the current use by statisticians
of de-identified data for statistical purposes. In its contributions to consultations regarding the
proposed amendments to the Privacy Act, the AIHW has been diligent in its efforts to ensure that
interference with the current collection and dissemination of nationally relevant health information
collected by the private and non-government sectors is not an inadvertent consequence of
introduction of the legislative changes.
The proposal for a unique patient identifier for electronic health records to be used to enable
merging of clinical records for medical purposes is probably the most contentious aspect of the
current proposals regarding the use of health information.
The National Health Information Management Group, comprising representatives of federal
and State levels of government agencies with responsibility for health and welfare matters is one
group addressing this issue. The Information Management Group has sponsored a project to
develop business rules for the aggregation of research data from electronic health records, as well as
arguing the potential benefits of such an improved data source. Such rules are essential to ensure the
transparency of processes used by statisticians to aggregate data for research purposes.
In spite of the spirited, and well informed debate, there have been no examples cited of
breaches of privacy when personal information has been used for medical research purposes, nor
any call for the section 95 provisions which enable such research, to be repealed. Indeed, the
Privacy Amendment Bill includes a new section 95A to extend the scope of the current provisions
to apply not only to health information held in the public sector as at present, but also to health
information in the private and non-government sectors.
If one accepts that “the development of use of official statistics serves as a tool for observing
and measuring the implementation of human rights and the effectiveness of human development”
(to paraphrase the first of the aims of this conference), then a case can be presented that statistical
material deserves special treatment in other areas of social research.
5. Australian Developments
I now want to describe important developments in Australia to extend the ambit of Human
Research Ethics Committees beyond medical research.
In 1999, the NHMRC released its National Statement on Ethical Conduct in Research
involving Humans (NHMRC, 1999). The National Statement builds on earlier such pronouncements
by the NHMRC which follow closely the 1964 Declaration of Helsinki published by the World
Medical Association. (The Declaration of Helsinki establishes principles and standards relating to
ethical conduct in health research.) The National Statement is seen as a significant and historical
development for research in Australia. In introducing the National Statement, three separate Federal
Ministers: for Health, Education and Industry jointly stated that “It is the first time that the national
research funding, peak higher education and academic bodies in this country have collaborated
formally to produce a comprehensive national statement of research ethics. …. The National
Statement applies to all disciplines of research involving or impacting upon humans, and thus
expands the health and medical focus of its predecessor.” (The National Statement is available at
http://www.nhmrc.health.gov.au.)
For the first time, the principles of ethical conduct covering research involving humans is
extended “to facilitate research that is or will be of benefit to the researcher’s community or to
humankind. “(NHMRC, 1999) This extends the requirement for review and approval of research
proposals by a Human Research Ethics Committee beyond research which is health-related to cover
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all forms of research which either involve humans directly or impact upon them directly or
indirectly, potentially providing a tool to extend the current exemption of personal information used
for medical research purposes to personal information used for the broader field of social research.
The use of personal information for medical research under the NHMRC Guidelines allowed
for by section 95 of the Privacy Act gives an assurance to the Australian community that their
human right to privacy of personal information is protected. Health information is highly sensitive
personal information. If the public trusts that the NHMRC Guidelines will guarantee the privacy of
their personal health information used for medical research purposes, it seems reasonable to assume
that they would accept similar well-constructed guidelines to cover other branches of research.
Statisticians, working under the UN Principles of Official Statistics, have an excellent record
for protecting data providers’ privacy. Extension of Guidelines as described above would
significantly extend the benefits to society to be derived from social research to support
development and human rights.
Statisticians should be active in seeking robust arrangements to assist high quality social
research while maintaining their excellent confidentiality record. Not to do so whenever much
greater potential exists for drawing on electronic records for research purposes would be a great
waste, and encourage second-best solutions that bypass official statistics.
REFERENCES
Australian Institute of Health and Welfare, (1997), The Australian Institute of Health and Welfare
Act 1987, Commonwealth of Australia
Australian Institute of Health and Welfare, (1999), Corporate Plan 1999 - 2002, Commonwealth of
Australia
Commonwealth of Australia, Privacy Amendment (Private Sector) Bill 2000
National Health and Medical Research Council, (2000), Guidelines under section 95 of the Privacy
Act, Commonwealth of Australia
National Health and Medical Research Council, (1999), National Statement on Ethical Conduct in
Research Involving Humans, Commonwealth of Australia
United Nations Statistical Commission, Principles of Official Statistics, (1994) United Nations
Statistical Commission, Report on the Special Session (11 – 15 April 1994), Economic and Social
Council, Official Records, 1994, Supplement No. 9
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