Privacy

What will happen to my information?

During this study, the research staff will record information about you and your study participation.

This includes the answers to the survey/interview questions. You cannot take part in this study if you do not consent to the collection of this information.

Identifiable Information is any data that could identify you (e.g. your name, date of birth, or address).

Your registration details and answers to surveys are stored by the specialist online research company, Horizon Research, which is managing the panel online. Data is stored at a tier 3 level security data centre at Auckland.

The following groups of people may have access to your identifiable information:

• Approved research staff administering surveys and interviews, processing saliva samples and deidentifying the information

• Laboratory staff, to process your saliva tests, if you are in the saliva collection group

• The ethics committees or government agencies from New Zealand or overseas if the study is audited. Audits are done to make sure that participants are protected, the study is run properly, and the data collected is correct.

• Rarely, it may be necessary for the study’s lead investigator, Professor Chris Bullen, to share your information with other people. For example, if there is a serious threat to public health or safety, or to the life or health of you or another person, or if the information is required in certain legal situations.

De-identified (Coded) Information

To make sure your personal information is kept confidential, information that identifies you will not be included in any report or publication generated by NIHI or any information sent to Wake Forest University School of Medicine investigators. Instead, you will be identified by a code. The research team will keep a list linking your code with your name, so that you can be identified by your coded data if needed.

The following groups may have access to your coded information:

• The research team at NIHI and Wake Forest University School of Medicine USA, for the purposes of this study

Regulatory or other governmental agencies in NZ and USA De-identified results data will be sent overseas to the following group:

• The research team at Wake Forest University School of Medicine, USA for the purposes of additional statistical analyses. Transfers of data to Wake Forest University School of Medicine will be under terms that require comparable protections for the data to those under New Zealand privacy laws. The results of the study may be published or presented, but not in a form that would reasonably be expected to identify you.

Rights to Access your Information

You have the right to request access to your information held by the research team.

You may ask us to confirm what personal information we hold about you, and request access to and/or correction of that information. In some circumstances we may be unable to provide the access or make the correction, for example, where the information has been collected as part of the study information and is important that it reflects the information originally provided at that time If you have any questions about the collection and use of information about you, you should ask the study’s lead investigator, Professor Chris Bullen.

Rights to Withdraw your Information

You may withdraw your consent for the collection and use of your information at any time, by contacting Professor Chris Bullen in writing. At this time, your study participation will end, and the study team will stop collecting information from you. If you agree, information and sample results collected up until your withdrawal from the study will continue to be used and included in the study. You may ask for it to be deleted when you withdraw unless you withdraw after the study analyses have been undertaken.

Māori Data Sovereignty

Māori data sovereignty is about protecting information or knowledge that is about (or comes from) Māori people.

We recognise the taonga of the data collected for this study. To help protect this taonga:

• We have consulted with Dr George Laking (Te Whakatohea), from the University of Auckland, about the collection, ownership, and use of study data from Māori participants.

• Māori organisations will be able to access de-identified study data, for uses that may benefit Māori.

• Māori health researchers will review the study results and the interpretation of them before the results are released to others in publications or presentations.

Can I find out the results of the study?

Participants can request a summary of the study results once the final study report is available (this can take up to nine months after the end of the study).