New Zealand Health Monitor ethical standards - Health and Disability Intelligence

Health & Disability Intelligence
New Zealand Health Monitor ethical standards

The New Zealand Health Monitor (NZHM) surveys and record linkage studies operate under strict ethical standards and are subject to the approval of research ethics committees, where appropriate. The main principles adhered to by the NZHM are:

respect for persons
informed consent
privacy and confidentiality
minimisation of harm
cultural and social responsibility

Respect for persons
Respect for persons involves recognition of the personal dignity, beliefs (including cultural and religious beliefs), privacy and autonomy of individuals. Individuals have the right to decide whether or not they wish to participate in the NZHM, and need not give reasons for refusing to participate. Individuals have the right to withdraw from the research at any time.

Field researchers involved in NZHM surveys (both telephone and face-to-face surveys) carry identification with them, including a reference telephone number, so that participants can establish the field worker’s legitimacy if they so wish.

Informed consent
Informed consent consists of three basic components:

adequate information is provided to enable an informed judgement to be made
information provided is in a form and manner that will enable it to be understood by each individual
the consent is voluntary (participation free from manipulation, coercion, inducement or any other undue influence).

Health & Disability Intelligence (HDI) requires that the survey provider attempt to match the language, ethnicity and gender of an eligible respondent with corresponding characteristics of the survey interviewer, when requested. Where appropriate, interpreters are available for potential participants whose first language is not English, and translations of the consent forms may be supplied.

The consent of the primary caregiver is obtained when interviewing people under the age of 15 years. If the interviewer has any concerns about the maturity or ability of a 15-year-old to participate in NZHM surveys, then the primary caregiver’s informed consent is requested in addition to the 15-year-old’s consent.

Additional consent is always obtained for the collection and analysis of blood and any other bodily substance. Samples are not used for purposes other than those for which consent was originally given. (Please see the section on cultural and social responsibility below, for more information on blood samples).

Privacy and confidentiality
Any information collected in the NZHM surveys that could be used to identify individuals is treated as confidential. Interviewers sign a confidentiality agreement before survey work begins, stating that they are prohibited by law from disclosing any information to anyone except authorised staff, and that they agree to abide by the Assurance of Confidentiality.

The names and addresses of people and households collected in the surveys are not stored with the responses. No information is released that would enable an individual or a household to be identified.

Unit record data are stored in a secure area and are accessible on a restricted ‘need to know’ basis only. All applications by academics or researchers to access unit record files are assessed according to predefined criteria (see chapter 6 for more information on this). If successful, applicants are required to sign an agreement to ensure no breach of confidentiality occurs in regard to the storage of, access to and use of the data and their outputs. Generally, only confidentialised unit record files are released.

Record linkage, even if based on anonymous probabilistic matching, raises privacy concerns. HDI works through privacy issues with the Privacy Commissioner and with key Mäori representatives (such as kaitiaki groups).

Minimisation of harm
Health & Disability Intelligence (HDI) attempts to minimise the risk of harm to participants in the NZHM. The safety of participants is of utmost concern. Only appropriately qualified staff are employed, and they are given detailed training and adequate supervision.

The results of any testing of blood or urine samples are returned to the participants with an explanatory letter as soon as possible after collection and analysis. When potential health problems are discovered through testing in the NZHM, the participant or caregiver is advised to see a general practitioner and, if necessary, is assisted to do so.

NZHM research involves the smallest number of human participants and the smallest number of tests on these participants needed to ensure scientifically valid estimates. Unavoidable risks, such as inconvenience and discomfort to the participant, are always balanced against the possible benefits to the participants from their involvement.

Minimisation of harm to Mäori research participants is enhanced by the inclusion of Mäori as partners and advisors in the design, implementation, management and analysis of NZHM research. Representatives of other groups, such as Pacific and Asian peoples, consumers of mental health services, etc, are also routinely invited to work with HDI to minimise the chance of harm to specific participants of the NZHM.

Cultural and social responsibility
New Zealand’s cultural diversity results in a range of views on the relative weight of individual and collective values. The NZHM attempts to not only be sensitive to individual research participant’s rights and interests, but also respect the social and cultural sensitivity of each particular population group in New Zealand. Where NZHM research may have an impact on a specific community or population group, we consult with those groups likely to be affected and makes every attempt to accommodate their recommendations, where possible.

An example of this is the consultation conducted by HDI with laboratory specialists, Mäori and Pacific groups in 2003 on the topic of blood samples. This consultation has led to the following protocols being adopted regarding the collection of biological samples in the health examination component of NZHM surveys.

Biological samples

Participants remain the owners of any biological sample provided for the NZHM. Researchers and analysts are the guardians of those samples.
All NZHM staff acknowledge and respect that for many people blood is regarded as precious and sacred/tapu because it carries genealogical information/whakapapa and/or religious significance.
Voluntary, informed consent is gained in a culturally appropriate manner for the collection, storage, analysis and return or discarding of any biological samples.
Participants are given the opportunity to offer a prayer or blessing before their biological samples are taken for storage and analysis.
Biological samples are stored in a safe, clean, secure place that is specifically allocated for this purpose. Samples will not be sent overseas. A blessing/karakia is performed for the place of storage to ensure spiritual safety.
Participants choose one of three options at the time of collection regarding the use of their samples: 1) the samples are not used for any tests or research other than that specified; 2) left-over samples can be used for other tests or research when the participant is informed about the purposes of the research and specific consent is obtained; or 3) left-over samples can be used for other research purposes and there is no need to inform the participant or obtain further consent.
Participants choose one of the following options at the time of collection regarding how they wish their samples to be discarded once testing is completed: the sample may be returned to them, buried (returned to the land), or destroyed in the laboratory.

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