For Tissue Donors & Families

What is a tissue bank?

It’s a collection of tissue samples and relevant clinical information stored for future use in ethically approved medical research.

Tissue banking begins with you – the patient and donor.

Your donated tissue may be used by researchers to improve treatments or even find cures for cancer and other diseases.

If you’d like to know more, click here.

 

How is my tissue collected?

If you are about to have a surgical operation or a biopsy we will  seek your consent to store a small portion from the tissue removed. This will be spare tissue, not required for any further diagnostic tests. This makes no difference to your planned  surgical procedure or biopsy. If there is no spare tissue, nothing will be donated or stored. If you are about to have a bone marrow biopsy and/or blood test we will seek your consent to take up to about a teaspoon of bone marrow (if obtainable) and/or up to an additional tablespoon of blood from a vein to store in the ARTB. If we can’t draw these amounts, we will take either a smaller sample or no sample at all. If you say yes, we will ask you to sign a form. We’ll also go through the process and answer any questions you have. Deciding to donate tissue will not affect your normal care and treatment If you say no, we won’t take any samples or pass on your medical records. Meet our team.

Do I have to consent each sample taken?

Currently, we ask for your consent each time we take a sample. We plan to change our procedures soon so that one consent will cover all samples taken.

What if I’m injured during the procedure?

Collecting samples is part of standard care. There is no scope for compensation from the ARTB if you’re injured in this way. Your coverage by ACC or the health system will not be affected by donating your tissue.

Is the Auckland Regional Tissue Bank ethically approved?

ARTB runs under HDEC approval NTX/10/03/018 to collect and store samples for future unspecified research (FUR). Researchers who need to use tissue as part of their research projects need to obtain additional ethical approval from the Ministry of Health’s Ethics committee to use tissue specifically for that project. Te Ira Kawai’s scientific advisory committee then oversees and approves the release of tissue samples from the tissue bank on behalf of the tissue donors

Why do you need information from my health records?

Your medical records help us decide the best use for your tissue. Your records can provide vital insights or links to information potentially gained from research studies using your donated tissue.

How will my privacy be protected?

You cannot be identified in any way. Tissue samples are kept anonymous.Your identity and tissue sample(s) remain confidential using a coded number. Only authorised ARTB staff who have signed confidentiality agreements can decode these numbers.

Do I get paid for my sample?

No. This is a voluntary donation.

How might research using my tissue affect my family?

Some research may investigate genetic information in your tissue. Genetic information is your biological code, your DNA. Parts of this code are passed from generation to generation. This means information discovered during genetic analysis of your sample may also affect members of your family.

I’m Māori. Why are Māori tissue samples and medical records needed?

Māori have a long history of supporting their whānau and the public good. This commitment is especially important today.

Cancer researchers need human tissue — particularly tissue from Māori — to help them make medical breakthroughs for cancer and other diseases. Te Ira Kāwai wants to improve the health outcomes for Māori, who have some of the world’s highest cancer rates.

What does this mean for my whānau and me?

Te Ira Kāwai acknowledges that Māori have unique cultural and spiritual beliefs related to human tissue.

Te Ira Kāwai are kaitiaki/guardians of donated human tissue. We are committed to ensuring that appropriate protocols and safeguards ‒ both scientific and cultural ‒ are established, respected and adhered to.

You may hold beliefs about a sacred and shared value of all or any tissue samples removed. We recommend you discuss the cultural issues associated with storing your tissue and/or genetic analysis on them with your whānau/family. 

Did you consult with Māori about setting up the ARTB and taking samples?

We consulted widely with iwi nationally, regionally and locally when setting up the ARTB. We’ll continue to consult around the use of tissue for genetic testing. Researchers are responsible for ensuring you’re fully informed about the benefits and risks of such decisions. This is one of the reasons tangata whenua are represented at all levels in the ARTB.

Find out more about our governance structure

Can anyone donate tissue?

Ethically we are not permitted to collect tissue from people who are not able to give fully informed consent

While there is no upper age limit for donors, participants sixteen years or under are consented using an age appropriate process.

 

Research

What type of research will be done with my samples?

We can’t be specific about research. Your samples, or information, may be used in a variety of research projects. Researchers may investigate the cells and chemical make-up in your samples, including genetic information. Our aim to better understand cancers and other diseases, and help develop new tests and/or better treatments.

Samples will only be available for research studies approved by an accredited New Zealand Ethics Committee or equivalent and our Scientific Advisory Committee.

Can I choose which research project uses my samples?

No.

What if a drug is developed using my tissue?

In this case, what we call the intellectual property rights will be owned by the researchers and governing institution.

Will my samples be sent out of New Zealand?

Future research may involve sending samples for study in overseas research institutions. We work only with international institutions that have similar ethics and privacy rules as the ARTB.

Will you tell me when my samples are being used?

No.

Will I receive the research results?

No. Research can take a long time and it would be unusual for the results to be analysed at an individual patient level.

Current Projects

What if the researcher doesn’t use all of the sample?

The researcher must return any remaining samples to the ARTB to be available for other approved research projects.

What if I change my mind about having my donated tissue stored in the bank and used for future research projects?

You can withdraw your consent and request for your samples to removed from the bank at any time. To withdraw, contact the ARTB

We will contact you to confirm the details of your request, e.g. arranging the safe and respectful return or disposal of your tissue sample.

What if I change my mind after my samples have been released?

Please note: you can only withdraw samples and accompanying relevant clinical information that have haven’t already been released.

Your normal care and treatment will not be affected if you change your mind.

What if I’m concerned about my rights?

If you have any queries or concerns about your rights as a tissue dank donor, you can contact an independent health and disability advocate. This is a free service provided under the Health and Disability Commissioner Act.

Phone: 0800 555 050

Free fax: 0800 2787 7678

Email: advocacy@hdc.org.nz

If you are unsure of your legal rights, seek legal advice through a community law centre, Citizens Advice Bureau or your own lawyer.

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

You can contact the ARTB [link to Contact us]