Disclaimer & Privacy Policy

The resources which are developed by the Genetic Alliance Australia and those resources developed elsewhere which are distributed by the Genetic Alliance Australia are intended for educational purposes only.

The Genetic Alliance Australia is a non government organisation service which aims to bring the agencies and services involved in the field of genetics to the attention of potential clients and the community. All efforts are made to ensure that all information and resources provided by the Association are based on current medical information and are accurate. Client referrals to genetics services, genetic supports and community services agencies by the Genetic Alliance Australia are based on current listings of availability of those services. The Alliance assumes no responsibility about the type, amount or quality of assistance, support or service provided by other agencies. The information is in no way to be seen or taken to be a substitute for individual advice concerning diagnosis or treatment from an appropriately skilled genetics specialist.

Genetic Australia Privacy Policy

Genetic Alliance Australia - Data Protection & Privacy Policy

Last Reviewed: 7 March 2025

For an easy read version of our privacy policy please contact us at info@geneticalliance.org.au

Genetic Alliance Australia (GAA) is committed to protecting individuals’ privacy and ensuring that personal information is handled in accordance with Australian privacy laws. This policy outlines how GAA collects, holds, uses, and discloses personal information under the Privacy Act 1988 (Cth) and the Australian Privacy Principles (APPs).
WHO WE ARE

Genetic Alliance Australia (GAA) is a not-for-profit Company (ACN 168 918 625) Limited by Guarantee (ABN 83 594 113 193). The organisation is a registered charity (CFN 15481), endorsed with Deductible Gift Recipient (DGR) status.

GAA respects the trust individuals place in us when sharing personal information. We are committed to upholding privacy protections that reflect not only our legal obligations but also our responsibility to the communities we serve.

In this policy, ‘we’, ‘us’, or ‘our’ refers to GAA, while ‘you’ or ‘your’ refers to any individual whose personal information we collect.

Personal information includes any details that can identify a living person, such as name, address, phone number, or email.

Health-related data refers to any personal information about an individual’s physical or mental health, medical history, or healthcare services they have received. This type of data is considered sensitive and is subject to strict privacy protections.

Providing personal information is voluntary. Individuals who choose not to disclose certain details will still have access to GAA’s support and advocacy services, though some specific programs may require minimum data collection.

All GAA staff, board members, and volunteers are required to follow strict privacy guidelines and adhere to internal privacy protocols aligned with the Privacy Act 1988 (Cth) and the Australian Privacy Principles (APPs). Staff receive training in handling personal data responsibly to ensure compliance with Australian data protection laws and safeguard personal information.

For further details on privacy rights and data protection in Australia, please visit the Office of the Australian Information Commissioner (OAIC) at www.oaic.gov.au.

APPLICATION OF PRIVACY LAWS
• The Privacy and Personal Information Protection Act 1998 (PPIP Act) does not apply as GAA is not a public sector agency.
• The Health Records and Information Privacy Act 2002 (HRIP Act) does not apply as GAA is neither a public sector agency nor a 'health service provider' (as it is an organisation that "...GAA may arrange for a health services to be provided to an individual by another organisation" within the definition of a health service provider in the HRIP).
• GAA is an 'organisation' within the meaning of the Privacy Act 1988 (Cth) because it "provides a health service to another individual and holds any health information except in an employee record." The definition of a health service under s6FB of the Privacy Act is broader than under the HRIP Act. Accordingly, GAA is subject to the Australian Privacy Principles (APPs).

WHAT INFORMATION DO WE COLLECT?

GAA collects personal information necessary to provide support, advocacy, and services to individuals, families, professionals, and organisations connected to genetic and rare conditions. The type of data we collect depends on how you interact with us.

GAA ensures that all individuals are informed about how their personal data will be collected, stored, and used. Consent is obtained through intake forms, email confirmations, verbal agreements, or online opt-in mechanisms. Where legally required, consent is not necessary for data sharing (e.g., child protection reporting
WHEN YOU CONTACT GAA’S HELPLINE (02 9295 8359) OR EMAIL (INFO@GENETICALLIANCE.ORG.AU)

When you contact GAA via our helpline or email, we may collect personal and/or health-related sensitive information to assist with your enquiry.

This may include:

• Your name, phone number, email address, and postal address (if provided)
• Details of your enquiry, including any genetic or health-related concerns relevant to your request
• Information about family members if your enquiry relates to genetic conditions affecting them
• Any other information you voluntarily provide to help us offer appropriate support
• Storing of email correspondence and written/note form details of telephone consultations with staff facilitating support services to ensure service continuity to you over time.
• Your communication preferences and consent for us to contact you


We collect this data to:

This information helps us provide support services, connect families with similar conditions, and develop relevant resources. We collect and store this information with your consent to respond effectively to your enquiry and provide relevant resources. If you disclose health-related information, we handle this information securely and in accordance with the Privacy Act 1988 (Cth) and the Australian Privacy Principles (APPs).

We do not share your personal details without your explicit consent unless legally required. If you prefer not to have your details retained after your enquiry is resolved, you can request deletion by contacting us at info@geneticalliance.org.au, by phone at 02 9295 8359 or by post at Genetic Alliance Australia, Level 6, The Garvan Medical Research Institute, 384 Victoria Road, NSW 2010.

WHEN YOU JOIN GAA AS AN INDIVIDUAL OR FAMILY MEMBER

When you become a member of GAA, we collect both personal and health-related sensitive information to provide support, resources, and community connections.

The information we collect may include:

• Your contact details – name, address, phone number, email
• Your gender (optional) – to help us tailor our services
• Details of the family member affected by a genetic or rare condition, including:
o Their name, gender (if provided), and date of birth
o Health-related information such as diagnosis and syndrome name (if applicable) and care requirements, development and behaviour, symptoms and strengths.
o Information about their medical providers, including hospitals or specialists involved in their care
o Other relevant details such as education, social services, or care arrangements (only if voluntarily provided)
• Your communication preferences and consent for us to contact you

This information helps us provide support services, connect families with similar conditions, and develop relevant resources.

We collect this data to:

• Register you as a member and provide access to support services
• Offer practical information and connect you with relevant resources
• Facilitate family matching services for peer support
• Send you relevant updates, newsletters, or publications
• Respond to queries and ensure continuity of care and support

We may also ask for optional demographic data, such as ethnic background, to ensure equitable access to our services and to identify areas where outreach efforts may be needed.

Providing this information is completely voluntary, and we only collect it with your explicit consent. Your consent preferences, including how we store and use your data, are recorded in our secure electronic database.

WHEN YOU JOIN GAA AS A PEER SUPPORT ORGANISATION

If you represent a peer support group or advocacy organisation, becoming a member of GAA helps strengthen collaboration within the rare disease community.

When you join, we may collect:

• Organisation details – including name, mission, and areas of focus
• Key contacts and role descriptions – for communication and networking
• Contact details – including email, phone number, and address (if applicable)
• Communities you support – including specific rare conditions or demographics
• Preferred ways of engaging – including participation in advocacy, research, or events

We collect this information to:

• Connect peer support groups with families seeking condition-specific support
• Facilitate collaboration between organisations working in the rare disease space
• Share opportunities for involvement in research, advocacy, and policy initiatives
• Provide access to resources, workshops, and networking events tailored for support organisations

Your organisation’s information will only be shared with your consent and in line with Australian privacy laws. You can update or request changes at any time by info@geneticalliance.org.au, by phone at 02 9295 8359 or by post at Genetic Alliance Australia, Level 6, The Garvan Medical Research Institute, 384 Victoria Road, NSW 2010.

WHEN YOU JOIN GA AS A POFESSIONAL MEMBER

GAA welcomes clinicians, researchers, allied health professionals, social workers and other professionals as members to enhance collaboration and knowledge-sharing in the rare and genetic disease sector.

When you join as a professional member, we may collect:

• Your name and contact details – including email, phone number, and workplace address
• Your job title and organisation – to facilitate networking and professional engagement
• Professional qualifications and areas of expertise – to connect you with relevant initiatives
• Your contact preferences – to ensure communication aligns with your interests and consent

We collect this information to:

• Provide you with relevant resources, research updates, and advocacy initiatives
• Facilitate connections between professionals, peer support groups, and individuals seeking expert information
• Share invitations to events, conferences, and professional networking opportunities
• Enable collaboration on research, policy, and service development

Your information will be securely stored and only shared with your explicit consent or as required by Australian privacy laws. You can update or request changes at any time by info@geneticalliance.org.au, by phone at 02 9295 8359 or by post at Genetic Alliance Australia, Level 6, The Garvan Medical Research Institute, 384 Victoria Road, NSW 2010.

WHEN YOU AGREE TO BE CONTACTED ABOUT TOPICS BEYOND SUPPORT SERVICES

GAA seeks your consent to keep you informed about opportunities beyond direct support services, including research and community initiatives. If you opt-in, we may collect and store:

• Your contact details – including name, address, email, and phone number
• Your communication preferences – specifying how you wish to be contacted (email, phone, mail, or a combination)

With your consent, we may send you updates on:

• Advocacy campaigns and policy developments
• Research opportunities, surveys, and consultations (may require additional consent)
• Volunteering and fundraising initiatives
• Awareness campaigns and community events

If you take part in research, feedback surveys, or consultations, we may also collect:

• Your opinions and experiences related to genetic conditions and healthcare
• Demographic information (e.g., age, location) if relevant to the study
• Explicit consent for data usage, including anonymisation for research purposes

Participation is always voluntary, and responses are handled with confidentiality. You may update your preferences or withdraw your consent at any time by emailing info@geneticalliance.org.au.
GAA respects your privacy and ensures that all data collection aligns with Australian privacy laws.

WHEN YOU MAKE A FINANCIAL TRANSACTION WITH GAA

GAA collects and processes financial information when you make a donation, purchase event tickets, or buy merchandise. This is necessary to maintain accurate financial records and comply with Australian legal and tax obligations, particularly those related to Deductible Gift Recipient (DGR) status.

Why We Collect Financial Information

GA is a registered charity with Deductible Gift Recipient (DGR) status, meaning that donations of $2 or more may be tax-deductible in Australia. To meet our legal obligations and issue receipts for tax purposes, we collect information related to our sources of income, which allows us to:

• Process and acknowledge donations appropriately
• Comply with Australian Taxation Office (ATO) regulations for financial reporting
• Retain financial records as required under the Australian Charities and Not-for-Profits Commission (ACNC) Act 2012 and the Corporations Act 2001 (Cth)

What Information We Collect

When you make a financial transaction via the GAA website, third-party fundraising platforms, or other payment methods, we may collect:

• Your name and contact details – including email, phone number, and postal address (if provided)
• Transaction details – such as the donation amount, items purchased, or event registrations
• Payment details – including bank or credit/debit card information (handled securely by our payment providers)

Payment Processing & Security

GAA does not store your credit or debit card details. All transactions are securely processed through third-party payment providers, including:
• PayPal – used for online donations and purchases (Privacy Policy)
• Humanitix – used for event registrations and ticketing (Privacy Policy)

If you donate or fundraise using a third-party platform (e.g., PayPal, Humanitix, JustGiving), your personal information will be handled in accordance with their privacy policies.

Other Payment Methods & Record Retention

If you make a payment or donation via alternative methods (e.g., post, cheque, direct debit, or bank transfer), we retain a paper and/or electronic record of your financial transaction. This information is:
• Stored securely and only accessed by authorised personnel
• Shared with our auditors as required for compliance
• Disclosed to relevant authorities only if legally required

WHEN YOU FUNDRAISE OR VOLUNTEER FOR GAA

GAA collects and stores personal information related to fundraising and volunteering to facilitate engagement, provide support, and comply with Australian legal and financial requirements.

When you participate in fundraising or volunteering activities with GAA, we may collect:

• Your contact details, including name, address, phone number, and email
• Details of your fundraising or volunteering efforts, such as event participation, campaigns, or awareness-raising initiatives
• Online fundraising pages you create, including links to PayPal or Humanitix pages used for donations or event registrations
• Any additional information you provide voluntarily, such as your reason for supporting GA or specific areas of interest

We collect and store this data to:

• Support and assist your fundraising or volunteering efforts – ensuring we can provide relevant guidance and promotional support
• Acknowledge and thank you for your contributions – including issuing receipts and providing recognition for your efforts
• Send you fundraising materials or updates relevant to your participation (if you have opted in)
• Maintain accurate financial records – as required for reporting to the Australian Charities and Not-for-Profits Commission (ACNC) and compliance with NSW Charitable Fundraising Act 1991
• Ensure transparency and accountability – helping us track funds raised, allocate resources effectively, and report outcomes
WHEN YOU BROWSE OUR WEBSITE OR ENGAGE WITH US ON SOCIAL MEDIA

GAA collects anonymous, non-personal data when you visit our website or interact with our social media channels. This helps us improve our services, understand engagement trends, and ensure our content remains relevant and accessible.

When you access our website, we may automatically record:

• Your IP address, browser type, and device information
• The date, time, and duration of your visit
• The pages you visit and how you interact with the site

When you engage with GAA on social media platforms, we may collect:
• Public interactions with our content, such as likes, comments, shares, and follows
• Engagement analytics, such as how often posts are viewed and shared

How This Information Is Used

This information is collected in an aggregated and non-identifiable form and is used solely to enhance our digital presence and improve user experience.

Use of Website Analytics

GAA uses Google Analytics to gain insights into website traffic and visitor behavior. This tool helps us understand general trends, such as which pages are most frequently visited and how long users stay on our site. No personally identifiable information is collected or stored through this process.

For further details on Google Analytics’ privacy policies, please visit: Google Privacy Policy

Your Privacy Choices

• You can browse our website anonymously, as no personal data is collected unless you voluntarily provide it (e.g., by submitting a contact form).
• You can adjust your social media privacy settings to control how you engage with our content.
• If you have any concerns about data collection or wish to learn more, please contact us at info@geneticalliance.org.au or my calling 02 9295 8359.


WHEN YOU ARE EMPLOYED BY GAA OR BECOME A BOARD MEMBER

If you work for GAA or serve on our Board of Directors, we collect certain personal information to meet our employment, governance, and regulatory obligations.

We Collect:

• Personal details – name, contact information, date of birth
• Employment and professional history – relevant roles and experience
• Tax, banking, and superannuation details – for payroll and financial administration
• Compliance documents – including Working with Children Checks, police checks, directorship disclosures, and conflict of interest declarations

We use this for:

• Employment administration, including payroll and superannuation processing
• Charity governance and compliance under Australian Charities and Not-for-Profits Commission (ACNC) regulations
• Strategic decision-making, including recruitment and governance

We manage this information in accordance with:

• The Privacy Act 1988 (Cth) and Australian Privacy Principles (APPs)
• The Fair Work Act 2009 (Cth) for employment obligations
• ACNC governance and reporting requirements


DATA SECURITY AND ACCESS

GAA is committed to protecting your personal information in accordance with the Privacy Act 1988 (Cth) and the Australian Privacy Principles (APPs). This section outlines how we store, process, and safeguard your data, who can access it, and your rights regarding your personal information.

HOW WE PROTECT YOUR INFORMATION

GAA has policies and security measures in place to safeguard personal data against unauthorised access, misuse, loss, or disclosure. These include:

• Secure data storage – personal information is stored on secure Australian-based servers with restricted access.
• Encryption and access controls – to protect sensitive and health-related information.
• Two-Factor Authentication (2FA) – applied to accounts and systems containing sensitive or health-related data to add an extra layer of security.
• Regular security reviews – working with IT providers to ensure compliance with evolving security standards.

While we take all reasonable steps to protect your data, no system is 100% secure, and we encourage individuals to contact us if they suspect a data breach.
WHO CAN ACCESS YOUR DATA?

Access to personal information is restricted to authorised personnel only, depending on their role:

• GAA staff and board members – can access your basic contact details if required for service delivery.
• Support and advocacy team – only designated staff members handling member inquiries have access to health-related information (i.e. GAA's Genetic Health Navigator)
• Third-party service providers – we may use external platforms (e.g., PayPal, Humanitix, and email services) to process transactions and communications. These providers must comply with strict confidentiality and data protection agreements.
• Legal and Child Protection Obligations – GAA is a mandatory reporter under the Children and Young Persons (Care and Protection) Act 1998 (NSW). If a child or young person is at risk of significant harm, we may be legally required to disclose personal information to child protection authorities without consent. Families are informed about these obligations where appropriate.

GAA does not share personal information with external organisations except in the following circumstances:

• The individual has provided explicit consent.
• The disclosure is legally required (e.g., child protection, law enforcement).
• The information is anonymised and used for statistical, research, or advocacy purposes.

GAA does not sell, trade, or share personal data for marketing purposes. We will only disclose personal information when legally required or when it is necessary to protect an individual’s rights, safety, or well-being.


CHILDREN AND VULNERABLE INDIVIDUALS’ DATA

GAA collects personal and medical information about children and vulnerable adults only with the consent of a parent, guardian, or authorised representative, except where disclosure is required by law. We ensure that data is stored securely and only accessible to designated staff handling support services. Before collecting sensitive information, we take steps to confirm consent and, where applicable, assess a person’s ability to provide informed consent.

In situations where there are concerns for the safety, welfare, or well-being of a child or young person, GAA staff members who are mandatory reporters may be required to disclose personal information to child protection authorities without consent, in accordance with the Children and Young Persons (Care and Protection) Act 1998 (NSW).

LINKS TO EXTERNAL WEBSITES

Our website may contain links to external sites we believe are useful or relevant to our community. However, GAA does not control these websites and is not responsible for their privacy practices. We encourage you to review their privacy policies before sharing personal information with them.

HOW LONG DO WE KEEP YOUR INFORMATION?

We retain personal data only as long as necessary to fulfill our legal, regulatory, and operational requirements. Retention periods vary depending on the type of data:

• Membership records – stored while you remain an active member. If you leave, we delete or archive your data unless retention is required for legal reasons.
• Health-related data – retained only with explicit consent and deleted upon request.
• Financial records – kept for at least 7 years in compliance with Australian Taxation Office (ATO) and ACNC requirements.
• Employment and governance records – retained as required under the Fair Work Act 2009 (Cth) and ACNC regulations.
• Research and survey responses – retained only as long as necessary, with anonymisation used where possible.

Once personal data is no longer required for legal or operational purposes, GAA ensures secure disposal. Physical records are shredded, and electronic records are permanently deleted from our systems using secure methods to prevent retrieval.

All personal data is securely disposed of when no longer needed, either through shredding physical documents or permanently deleting electronic records. You may also request data deletion at any time, subject to legal obligations.
YOUR RIGHTS UNDER AUSTRALIAN PRIVACY LAWS

GAA takes reasonable steps to ensure personal information is accurate, up to date, and relevant. Individuals may request corrections to their personal data at any time by contacting us by email at info@geneticalliance.org.au, by phone at 02 9295 8359 or by post at Genetic Alliance Australia, Level 6, The Garvan Medical Research Institute, 384 Victoria Road, NSW 2010. Any disputes regarding data accuracy will be managed in accordance with privacy law standards,

Under the Privacy Act 1988 (Cth), you have rights regarding how your personal data is collected, stored, and used. These include:

• Right to be informed – to know why and how your data is collected and used.
• Right to access – to request a copy of the personal information we hold about you.
• Right to correction – to update or correct any inaccurate or incomplete data.
• Right to withdraw consent – to opt out of marketing communications or revoke consent for non-essential data processing.
• Right to request deletion – to have your data erased, where legally possible.
• Right to complain – if you believe your data has been mishandled.

You can exercise these rights by contacting info@geneticalliance.org.au. We will respond as quickly as possible, but always within 30 days as required by law.

If you are dissatisfied with how GAA handles your request, you can lodge a complaint with the Office of the Australian Information Commissioner (OAIC): www.oaic.gov.au
OVERSEAS DATA DISCLOSURE

GAA may disclose limited personal information to overseas recipients, where necessary, with explicit consent, for collaboration with international rare disease organisations, such as SWAN UK,
Genetic Alliance UK or Unique Rare Chromosome Disorders Support Group.

Any overseas disclosures will align with Australian Privacy Principles (APP 8), ensuring privacy protection standards equivalent to Australian law.

HOW TO ACCESS AND CORRECT PERSONAL INFORMATION

Individuals have the right to access or correct their personal information held by GAA. Requests can be made using the following contact details:

Position: CEO, Genetic Alliance Australia
Email: info@geneticalliance.org.au
Phone: (02) 9295 8359
Postal Address: Level 6, 384 Victoria Street, Darlinghurst NSW 2010

Access Requests
• Individuals can request a copy of the personal information GAA holds about them.
• Requests should include sufficient detail to identify the relevant records.
• GAA will process access requests within 30 days and will provide the requested information unless an exemption under the Privacy Act 1988 (Cth) applies.

Correction Requests
• If personal information is inaccurate, out-of-date, incomplete, or misleading, individuals may request a correction.
• Where a correction is not possible, GAA will notify the individual of the reason and provide options for response.
• GAA will process all correction requests within 30 days, ensuring compliance with privacy laws.

Complaints Process

If an individual believes their personal information has been mishandled, they may lodge a complaint through the following steps:

Step 1: Internal Review (GAA)
1. Submit the complaint in writing to GAA using the contact details above.
2. GAA will acknowledge receipt of the complaint within five business days.
3. An internal investigation will be conducted, including the determination of whether GAA is bound by a registered APP code.
4. A written response will be provided within 30 days detailing the outcome and any corrective actions taken.

Step 2: External Review (OAIC)

If the complaint is not resolved to the individual’s satisfaction, it may be escalated to the Office of the Australian Information Commissioner (OAIC):
• Website: www.oaic.gov.au
• Phone: 1300 363 992


CHANGES TO THIS POLICY

GAA may update this Privacy Policy periodically to reflect:

• Changes in Australian privacy laws or regulations
• Updates to our services, technology, or security practices
• Improvements based on community feedback

The latest version of this policy will always be available on our website (geneticalliance.org.au). We encourage you to review it regularly.

QUESTIONS OR CONCERNS

If you have any questions or concerns about how we protect your personal information, please contact GAA’s CEO at info@geneticalliance.org.au or 02 9295 8359.

Call on +61 2 9295 8359 for more information.