Updated: 19/06/2024

Genetic Insight is a genetic counselling and testing service that is based in New Zealand. We provide genetic counselling, testing, information and advice through multiple means, including through our website https://www.geneticinsight.co.nz/.

Our commitment to privacy

Genetic Insight is committed to protecting the privacy and security of our clients’ personal information. We aim to retain and use your personal information in accordance with our Privacy Policy, the Privacy Act 2020 and Health Information Privacy Code 2020. This privacy policy outlines how we collect, use, store, and protect your data. If you have any questions or concerns about our Privacy Policy, you can contact us by email at romyk@geneticinsight.co.nz.

What is personal information?

Personal information means information or an opinion about an identified individual, or an individual who is reasonably identifiable

• whether the information or opinion is true or not; and
• whether the information or opinion is recorded in a material form or not.

This includes information such as name, date of birth, gender, contact information, credit/debit card information, health information.

What information do we collect

We may collect the following types of information:

• Personal identification details (e.g., name, address, contact information, age, sex, gender identity, etc.)
• Personal health, medical and genetic information relevant to the counselling and testing services (e.g. cancer history, surgical history, current medications, etc.)
• Sensitive information which is defined by law as the following type of information: racial or ethnic origin, political opinions or associations, religious beliefs or associations, philosophical beliefs, sexual orientation, genetic information, biometric information, biometric templates
• Family history and other information pertinent to genetic assessment
• Bank account/credit card details for payment purposes
• Non-personally identifiable information such as anonymous usage data, IP addresses, browser or platform type, etc.

Why do we collect this information?

In order for us to provide you with our service, we require a variety of personal information about you and/or your whānau/family. This information is important for ensuring that the information and advice we give you in our professional capacity is accurate and personalised. Personal information enables us to provide you with genetic testing and counselling services, medical assessments and treatment or management advice that is appropriate to your individual medical and family history, values and beliefs.

Collecting personal information also ensures we can communicate effectively with you and respond to your questions and enables us to improve our service delivery.

You can choose which personal information you do, or do not, share with us. However, if you choose not to share certain personal information with us, it may limit our ability to carry out some or all our duties to provide you with our service.

How does Genetic Insight collect your personal information?

There are many ways in which we may collect your personal information. This includes, but is not limited to:

• Information supplied through our website (such as name, date of birth and brief family history information) when you request an appointment online
• Information supplied through email, social media, telephone or video correspondence
• From third parties such as your health professionals or blood relatives (if they are also clients of our service)

Our obligations when collecting personal information from third parties

When collecting information from third parties (your health professionals, blood relatives), we only do so with your express consent, or if it is authorised or required by law, or if it is not reasonable or practical to collect that information from you directly. We take all reasonable steps to ensure that the confidentiality of your personal information is maintained. We must also comply with any further obligations outlined by New Zealand Privacy Laws.

Use of Information 

By sharing your personal information with us, you consent to us using your information for the following purposes:

• To provide personalised genetic counselling and testing services
• To communicate with clients regarding their care
• For internal record keeping and service improvement
• Ensuring compliance with our contractual and other legal obligations to you

Data Sharing and Disclosure 

By sharing your personal information with us, you consent to us disclosing your information for the following purposes:

• Sharing with third-parties where it is necessary for providing the services requested (such as sending information to laboratory services, health care professionals, lawyers, other professionals, counsellors, service providers, agencies, support services, etc.)
• We are required by law or regulation to do so
• You have given explicit consent for a specific purpose

When data is shared to third-party service providers, your data may be sent outside of New Zealand (such as laboratories for genetic testing). Genetic Insight is committed to working with third-party service providers who we believe maintain acceptable standards of data security compliance and we do our part to meet those standards as they apply to us. By providing us with your information, you consent to your information being used, stored and disclosed overseas and acknowledge that the obligations that apply under the New Zealand Privacy Laws may not apply in those circumstances.

Data Security 

We take the security of your information seriously and implement appropriate technical and organisational measures to protect it against unauthorized or unlawful access, alteration, disclosure, or destruction.

Your personal information will be stored on the Cliniko online health practice management software platform. Data is backed-up daily using AES-256 encryption algorithm (248-bit SSL). Data is stored in Australia in highly secure facilities. Access to the Genetic Insight Cliniko account is restricted to authorised staff only and requires 2-factor authentication to access.

For more information about Cliniko, their security and privacy details can be found here: Cliniko Security.

Other data may be stored on a personal computer that is not connected to a network. Access to the laptop is password protected, with 2-factor authentication.

Your personal information will stay on the database indefinitely until you advise you would like it removed, unless we de-identify it or destroy it earlier in accordance with privacy law requirements.

Your Rights 

You have the right to:

• Access the personal information we hold about you
• Request correction of any inaccurate data
• Request deletion of your data, subject to legal requirements
• Withdraw consent for the use of your data, where applicable

If you wish to access or update your personal information, please contact us at romyk@geneticinsight.co.nz. For your protection, we will take reasonable steps to verify your identity before granting access to or making any corrections to or deletion of your information. 

We also have obligations to take reasonable steps to correct personal information we hold when we are satisfied that it is inaccurate, out- of-date, incomplete, irrelevant or misleading for the purpose for which it is held.

In most cases, we can provide you with a summary of your information free of charge. However, in some circumstances, reasonable costs may be charged to you in accessing your information in accordance with and subject to the New Zealand Privacy Laws.

Your rights to access personal information are not absolute and in certain circumstances, privacy laws dictate that we are not required to grant access such as:

• access would pose a serious threat to the life, safety or health of any individual or to public health or public safety
• access would have an unreasonable impact on the privacy of other individuals
• the request is frivolous or vexatious
• denying access is required or authorised by a law or a court or tribunal order
• access would be unlawful, or
• access may prejudice commercial negotiations, legal proceedings, enforcement activities or appropriate action being taken in respect of a suspected unlawful activity or serious misconduct.

Changes to This Policy 

We may update this privacy policy from time to time. Any changes will be posted on our website and, where appropriate, notified to you by email.

Contact Us 

If you have any questions or concerns about this privacy policy or the handling of your data, please contact us at romyk@geneticinsight.co.nz. If we can not resolve your complaint related to the privacy of your information, you may contact the Office of the Privacy Commissioner directly on 0800 803 909.