About tissue banking

What is a Tissue Bank?

A tissue bank is a collection of tissue samples. The samples and relevant clinical information are stored for future use in ethically approved medical research.

Does the decision to donate samples affect my care in any way?

No. Your normal care and treatment is not affected by your decision.

How is my tissue collected?

If you are about to have a Surgical Operation or a Biopsy: 

We seek your consent to store a small portion from the tissue removed. This will be spare tissue, not required for diagnostic tests anymore. 

This spare tissue would normally be discarded after diagnostic tests are completed. This makes no difference to your planned surgical procedure or biopsy. The spare tissue will be stored in the Auckland Regional Tissue Bank for future use in ethically approved medical research. 

In the event there is no spare tissue, nothing will be stored. 

If you are about to have a Bone Marrow Biopsy and/or Blood Test: 

We seek your consent to take up to an additional 4mL of bone marrow (if obtainable) and/or up to an additional 16mL of venous blood (if obtainable) to store in the Auckland Regional Tissue Bank for future use in ethically approved medical research. 

In the event it is not possible to draw the additional volumes sought, either no sample or a smaller volume of sample would be stored.

How often will tissue samples be stored?

Sometimes tissue samples are removed on more than one occasion during the assessment and treatment of your condition. We will seek your consent on each occasion before tissue samples are taken. On each occasion your consent is entirely voluntary.

Why do you need information from my health records?

We seek your consent for authorised Auckland Regional Tissue Bank staff and approved researchers to access relevant clinical information from your health records for the purpose of ethically approved research. This will contribute to building knowledge about the best use for your tissue. Information from your health records can provide vital insights or links to information potentially gained from research studies using your donated tissue.

How will my privacy be protected?

Your identity, tissue sample(s) and health information will remain confidential. Donors and tissue samples are de-identified and given a coded number which only authorised Auckland Regional Tissue Bank staff can decode. Only authorised Auckland Regional Tissue Bank staff and approved researchers will be permitted to have access to your health records. 

All researchers will be required to ensure your privacy is protected. This will be achieved using a legal contract between the researcher and the Auckland Regional Tissue Bank that must be signed before any tissue samples or information is released to the researcher.

Will I receive the research results?

No. This is because results may not be available for a very long time and it would be unusual for the results to be analysed at an individual level.

How might this affect my whānau/family?

Genetic information is your biological code, your DNA. Parts of this code are passed from generation to generation; therefore information discovered during genetic analysis of your sample may also have an impact on members of your whānau/family.

You may hold beliefs about a sacred and shared value of all or any tissue samples removed. The cultural issues associated with storing your tissue and/or undertaking genetic analysis on them should be discussed with your whānau/family as appropriate. There are a range of views held by Māori around these issues; some iwi disagree with storage of samples and genetic testing citing whakapapa and advise their people to consult prior to participation in research where this occurs.

Will there be Māori consultation?

Wide consultation with iwi nationally, regionally and locally has taken place and continues around the use of tissue for genetic testing. To date the outcome of this consultation is the belief that researchers have the responsibility to ensure participants are fully informed about the benefits and risks of such decisions. To ensure this occurs mana whenua are represented at all levels of the Auckland Regional Tissue Bank governance structure.

What type of research will be done with my samples?

We cannot be specific about what tests might be done on your samples. However, they will only be available for research studies approved by an accredited, New Zealand Ethics Committee or equivalent and the Auckland Regional Tissue Bank Scientific Advisory Committee. These researchers may investigate the cells and chemical make up in your samples, including looking at the genetic information. This type of research will enhance the understanding of cancers and other diseases and may help to develop new tests and/or better treatments. Samples may be used in a variety of research projects. If you agree to donate your samples, then you cannot choose what type of research they will be used for or where they will be sent. 

Will my samples be sent out of New Zealand?

Future research may involve sending samples for study in overseas research institutions. Some research could be carried out by commercial biomedical organisations. Both of these types of research will have the same ethical, cultural and biological responsibilities.

What if I change my mind?

You have the right to withdraw your consent at any time. If you wish to do so, please contact the Auckland Regional Tissue Bank in writing (contact details on page 4). You will be contacted to confirm the details of your request, e.g., arrange the safe and respectful return or disposal of your tissue sample(s), including with an appropriate karakia/blessing from University of Auckland Māori health representative. You will receive written confirmation when your request has been actioned. Please note, only samples and accompanying relevant clinical information that have not already been released to approved research can be withdrawn. Your normal care and treatment will not be affected if you change your mind. 

How will my samples be disposed of?

Your sample(s) will not be disposed of unless you request this (as described above). If your sample is given to a research project and there is some remaining at the completion of the research, the legal contract signed by the researcher will require them to return any remaining samples to the Auckland Regional Tissue Bank to be available for other approved research projects. 

If you request your sample(s) to be disposed of, the Auckland Regional Tissue Bank will explain what options are available, including with an appropriate karakia/blessing.

Commercial issues?

After studying your tissue sample(s) the information gained could lead to the development of new tests or treatments. The intellectual property rights from this will be owned by the researchers and governing institution.

Compensation – What if I suffer an injury during the procedure?

Procedures undertaken to collect samples for the Auckland Regional Tissue Bank will be part of standard care. No additional procedures will be undertaken. Therefore there will be no compensation from the Auckland Regional Tissue Bank if an injury occurs during one of these procedures. Your coverage by ACC or the health system will not be affected by donating your tissue.

Is the Auckland Regional Tissue Bank ethically approved?

Yes - This research resource has received ethical approval from the Health and Disability Ethics Committees (HDECs).

Where is the Auckland Regional Tissue Bank?

The Auckland Regional Tissue Bank includes tissue banks located at Middlemore Hospital, North Shore Hospital, Auckland City Hospital and the University of Auckland. These tissue banks are governed by the University of Auckland, Faculty of Medical and Health Sciences.

Who may I contact if I have more questions or concerns?

The Auckland Regional Tissue Bank Manager, located at the University of Auckland 

Faculty of Medical and Health Sciences
85 Park Road
Grafton
Auckland 1023 

Phone: +64 9 9234058 

Mobile: +64 27 8073381

E-mail: tissuebank@auckland.ac.nz

You can find more information about the Auckland Regional Tissue Bank on the Academic Health Alliance website at: www.aaha.org.nz

If you have any queries or concerns about your rights as a Tissue Bank donor, you can contact an independent Health and Disability Advocate. This is a free service provided under the Health and Disability Commissioner Act. 

Phone: (NZ wide) 0800 555 050
Free Fax: (NZ wide) 0800 2787 7678 (0800 2 SUPPORT)
E-mail: (NZ wide) advocacy@hdc.org.nz

If you are unsure of your legal rights you should seek legal advice. This can be free from your community law centre, citizen’s advice bureau or your lawyer which would include a fee.