Growing Up in New Zealand principles for data guardianship

At the beginning of the study, Growing Up in New Zealand developed a protocol for the way the information collected from participants would be looked after.  This protocol was based on principles of privacy, public good and Kaitiaki, or guardianship.

We did this because we recognise that participants and their families are trusting us with their personal information.  We value this relationship and it is at heart of everything we do to ensure that participant information is safe, confidential and used for research purposes only.

The principles we adopted at the beginning of the study still guide us today. They include:

• The information a participant provides to the study is the property of the participant.
• The research team will act as guardians of the information provided by participants and will ensure it complies with participant consent and protects participant anonymity.
• Information contributed by Māori will be treated as a taonga whose value is to be preserved and protected and used productively and for the benefit of Māori.
• Information collected is for the purposes of approved research only.
• Use of study information must protect relationships with study participants and must not jeopardise the future integrity of the study.
• A Data Access Committee will ensure that information provided by participants is only used for appropriate research purposes.
• The research team will adopt best practice security procedures to protect the privacy of participants and to protect against unauthorised access to the information.

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Compliance with legislation and guidelines

Growing Up in New Zealand complies with relevant legislation and guidelines to protect the privacy and information of those involved in the study, including:

• Obtaining ethical approval for the study and each data collection wave from the Health and Disability Ethics Committee.
• University of Auckland Guidelines for Observational Studies.
• The Privacy Act.
• The National Ethics Advisory Committee Guidelines.
• Health Research Council Guidelines.
• The Five Safes Data Confidentiality Guidelines.

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Privacy and confidentiality during data collection waves

Growing Up in New Zealand seeks ethical approval from the Health and Disability Ethics Committee before every data collection wave.

The Ethics committee approves all interview questions, consent forms and information sheets before we meet with any of the study participants.

Everyone participating in Growing Up in New Zealand has to provide informed consent. When the children are young, the mother or primary caregiver provides consent, but children also provide “assent” that they are willing to take part.

There are a number of consents sought covering interviews, observations, biological samples and DNA samples.

At the face-to-face interview, only trained interviewers are used. Our interviewers sign confidentiality agreements to say they will not discuss any of the interviews with anyone outside the study team.

During the interview, the answers are recorded using a laptop. This information is then allocated a specific numbered code and all personal identifying details are removed.

The de-identified information is then transferred to a secure database in the research office and all information contained on the laptop is erased.

When all the interviews are done, the researchers take the answers and analyse them. Researchers only analyse de-identified information. They do not have access to anyone’s personal details.

Researchers who request access to Growing Up in New Zealand data sets need to fulfill a list of criteria and need to be approved by our Data Access Committee.

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Data Storage and Access

All participant information is de-identified and stored at the University of Auckland.  We use advanced data storage systems to ensure that the information is safely stored and protected.

Researchers can only access Growing Up in New Zealand data sets via secure research facilities at the University of Auckland or via a secure e-research platform operated by the University of Auckland.

We follow the internationally recognised “five safes” principle:

• Safe people – researchers using Growing Up in New Zealand data and information are vetted to ensure they are bone fide researchers.
• Safe projects – projects that use Growing Up in New Zealand information must abide by our Kaitiaki, privacy and public good principles.
• Safe settings – Growing Up in New Zealand employs a suite of privacy and security facilities to ensure data and information is protected, safe and secure.
• Safe data – all information is de-identified so that all personal details are removed. Researchers are only given access to the data they need.
• Safe output – all information is checked before it is published to ensure it does not contain any results which could inadvertently identify an individual.

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Storage of biological samples, including DNA

During some data collection waves Growing Up in New Zealand has taken biological samples and DNA samples, with participant consent.

These samples are safely secured in University of Auckland storage facilities. Samples are labelled with a special numerical code and there is no personal identifying information attached to any sample.

Samples are stored for future use and there are strict protocols in place governing the future analysis of samples.   Samples will only ever be used for research that is in the public good.  They will never be used for any other purpose.