Frequently Asked Questions for Families Considering Tissue Donations
What arrangements need to be made in preparation for autopsy tissue donation?
The first step is to talk with your oncologist, social worker, or nurse. They will make a plan that works for your family. If you would like to print a handout about tissue donation to give to them, please click on the “Handout for Doctors” button.
What is the cost of donating autopsy tissue?
There is no additional cost to you or your family. Your donation is a gift that makes research possible. You will still have the funeral expenses you would otherwise have had without a donation.
Will my child look the same after the autopsy? Can we have an open casket?
Yes. In most cases you can have an open casket and you will not be able to tell that an autopsy has been performed. We recommend that you talk to your oncologist to confirm that this will be true for your child.
When should I start making arrangements for autopsy tissue donation?
It is best to speak with your oncologist, nurse, or social worker as soon as possible, because it can take time to make the necessary arrangements.
Can I change my mind about donating autopsy tissue?
Yes. You can change your mind at any time.
Can I choose an autopsy donation if my child dies at home?
Yes. If your child dies at home your funeral home will transport your child to the autopsy site and then back to the funeral home.
If I didn't make arrangements and my child dies, can I still donate tissue?
Donating your child’s autopsy tissue may still be possible even if you decide to do so at the last minute. As a first step, you will need to speak with your oncologist, social worker, or nurse. Please keep in mind that making a donation is easier if arrangements are made ahead of time.
How soon after death does the autopsy tissue donation need to happen?
You can stay with your child for as long as you wish after his or her passing. While many researchers prefer tissue donated within 12 hours, they also understand that your family’s needs come first.
How long does it take to perform the autopsy tissue donation?
It takes only a few hours. Even for families who wish to hold the funeral as soon a possible, timing is generally not an issue.
Is there currently research under way on autopsy tissue?
Yes, but it is often difficult for researchers to obtain the tissue they need. By donating autopsy tissue, you will make research possible and help other children with brain tumors. You can find out more about current research on our Research page.
Can I choose where the tissue will go?
Yes. If you are interested in choosing where the tissue will go you should speak with someone on your medical team. Please note: it is usually possible to send tissue to more than one researcher. Information on researchers in need of tissue can be found on our Research page.
If I am interested in making arrangements for autopsy tissue donation, do I need to contact the researchers myself?
No. Your oncologist or another member of your medical team can do this for you.
If I choose to donate, will the tissue automatically go to research?
Most of the donated tissue is used for research immediately. Some is banked so that larger-scale studies can be performed.