The Malaghan Institute of Medical Research Immune Tissue Bank aims to facilitate future research into the immune system, and to help diagnose, prevent or treat illnesses such as cancer, infectious disease, and inflammatory disorders.
The Immune Tissue Bank was established in November 2019, and it holds certain blood, cell and tissue samples that have been donated to the Malaghan Institute for future research use. The Immune Tissue Bank does not collect samples directly – rather, it is used to hold samples that have been donated for future research by people who participate in specific studies or trials conducted or coordinated by the Malaghan Institute.
Participants involved in certain studies and clinical trials involving the Malaghan Institute may be offered an optional consent form for Immune Tissue Bank donation. Donating cells, blood or tissue to the Immune Tissue Bank for future research is always optional, and is not a requirement for taking part in any study. There are no direct risks involved in donating a sample to the Immune Tissue Bank, as no additional procedures are required. If you have not given your specific consent for Immune Tissue Bank donation, your cells or tissue will not be held within the Immune Tissue Bank, although it is possible that a study you took part in had its own allowance for future research – that should be made clear in the original consent form(s) you signed.
Confidentiality is extremely important to us. Within the Immune Tissue Bank, donated cells, blood or tissue will be labelled with a study number and not with direct identifiers (such as your name, date or birth or national health index number). However, as well as storing the donated samples, the Immune Tissue Bank will store the consent form that you signed, in a separate and secure location. This means that Immune Tissue Bank samples are ‘reidentifiable’, which is necessary so approved researchers can link future research findings with relevant clinical information, and so that we can honour any requests to destroy stored samples. Only authorised researchers can access the stored consent forms.
The Malaghan Institute Immune Tissue Bank has ethical approval from the Ministry of Health’s Health and Disability Ethics Committee (HDEC reference 18/CEN/78). A governance group, which includes medical, scientific, layperson and Māori representation, reviews applications to store samples within the Immune Tissue Bank, and applications to use the stored samples for future research. Future research that is not part of an original study for which you donated the tissue requires ethical review. If you consented for your samples to be used for future research overseas, that research may be approved by an ethics committee that does not have New Zealand representation.
Samples that are already preserved will be stored at room temperature. Live cell tissue samples will be frozen and stored in a freezer or cold storage tank. Some frozen cells or tissues may be thawed at a later date so that research on viable, living cells can take place. These cell types are valuable for research into how the immune system works in health and disease, and into new treatments.
The Immune Tissue Bank consent form gives an option to donate tissue for DNA (genetic code) sequencing, or to decline this. If you agreed to DNA sequencing, some researchers may want to investigate the molecules within your cells which could include genetic information (DNA or RNA). If you prefer for your tissue not be used for research looking at genetic changes or sequencing of DNA or RNA, you have the option to opt out of this on this consent form. If you have already donated tissue to the Immune Tissue Bank and you want to change this option, or to withdraw your consent entirely, you can do so as indicated below.
If you consented for your samples to be sent overseas for future research, your samples might be sent overseas. Overseas studies will comply with overseas ethics committee requirements, without New Zealand representation. Samples will not be stored overseas for longer than one year. If you have already donated to the Immune Tissue Bank and want to change this option, or withdraw your consent, you can do so as indicated below.
We cannot provide specific results from future research carried out using tissue donated to the Immune Tissue Bank, because the identity of the donors will not usually be available to the researchers conducting that research. However, we encourage interested people to follow the Malaghan Institute’s website and social media channels, or sign up for our newsletter, for the outcomes of research conducted at the Institute.
Unfortunately, we cannot return your samples to you. This is because adding the preservatives required for long-term storage makes the samples potentially hazardous. However, you can ask for your samples to be destroyed if you change your mind, and no longer want to them to be held in the Immune Tissue Bank.
Once Immune Tissue Bank samples have been used for research, or are not needed any more, they are safely disposed of by incineration (heating at a high temperature), in a similar way to samples provided for hospital tests. If you wish, you can request a karakia before disposal of any of your samples. However, if you have agreed for your samples to be sent overseas, then a karakia before disposal may not be available.
You have the right to withdraw your consent for storing Immune Tissue Bank samples at any time. Donating your samples is voluntary, and you are free to decline to participate. If you change your mind at a later time, you may withdraw your consent, and ask for your samples to be removed from the Immune Tissue Bank.