SPEaR Good Practice Guidelines 2008: Research and evaluation ethics
Applying the Principle of Respect to research and evaluation ethics
To ensure their work is ethical respectful, Officials should:
- Seek informed consent (which may be informed consent to use of the data in a further study) from all potential participants.
Encouraged by ethics review committees, New Zealand researchers routinely store data for between five to 17 years.
However, the sharing of this data is prohibited, as usually no informed consent was gained at the time of data collection for its reuse. To gain a reconsent for this data would be a cumbersome process that few would attempt.
Internationally and nationally there has been a sea change in the informed consent process. For example, two separate sets of Ministry of Health guidelines are outlined in Section 8 below.
The new Observational Studies Guidelines balance the traditionally sacrosanct mandating of individual consent against the interests of the public good.
The Ministry of Health's draft guidelines on Tissue Banking go beyond the traditional one-off direct consent process providing for a broad consent allowing research participants to consent both to a particular research project at the same time as consenting to their data being saved and shared with other researchers conducting unspecified future research in the future.
Note: broad consent by definition cannot be enacted retrospectively. (Dr Martin Tolich - Discussion Document SPEaR data saving and sharing project: Challenges, Risks and Solutions for Administrative Data and Researcher Sourced Data ).
- Use appropriate processes for gaining informed consent These processes can differ depending on participant characteristics (language/s, age, gender, culture, experiences, cognition) and whether the project involves individuals 'at large' or as part of 'groupings/communities of interest'.
Tertiary institutions usually require written consent forms. Some government agencies have begun to adopt written consent forms. The researchers need to ensure such forms are kept separate and secure so that confidentiality for participants is not compromised. Oral consent should also be undertaken prior to collecting data even with a written consent form.
- Refrain from using coercion when seeking participants for research and respect participants' absolute right to decline to participate in or withdraw from the research programme and from the use of their data in future unspecified research.
Coercion is the opposite to informed consent, people should be free to choose to participate in research or not, and to have the information they need to make that choice. They should be able to withdraw their consent and have their information removed from the research data. If this is not possible, they should be notified as part of the initial consent seeking. Where there are population vulnerabilities - e.g. prisoners, agency clients, particular care needs to occur to avoid coercion.
- Refrain from offering inducements to potential participants.
An inducement is where a benefit is notified before the actual data collection begins or is completed. It may involve a promise of money or goods or vouchers other than the reimbursement of expenses such as travel for the interview, or childcare. Light refreshments at an interview venue (tea/coffee and biscuit/fruit) would not be considered an inducement. Officials should not be involved with research where inducements are utilised.
- Offer appropriate compensation (petrol vouchers, small gift, food, etc), to participants as a thank you for their time, and to venue organisers/arrangers for their assistance.
A 'thank you' may be offered after data gathering has occurred. This may be in the form of a petrol or book voucher, a small craft item or even a $20 note. Agency rules will vary and the researcher should clarify practice prior to field engagement. Where receipts are required, which could conflict with participant confidentiality, the person who arranged the interview venue/made contact with the participant may be acceptable as the signatory 'on behalf of' the interviewee.
- Treat any data or other information produced in the course of the research as confidential except as agreed in advance with the research participants.
Sometime a community or group may wish to be identified - this should never be assumed and any consent should be very clearly fully informed and explicit. Oral history projects identify individuals. It is possible to 'time protect' identifying information (Census records 100 years+ etc). SNZ have protocols to protect unit record data.
- Recognise that what is 'ethical' or not can vary significantly across cultures.
