Part II of the Genetic Alliance Interactive Guide

Autopsies and Tissue Collection

Another difficult situation for families is deciding whether to make a loved one's body available for autopsy. Autopsy, once a routine practice in American medicine, is becoming rare, and there are few instances in which it can be more valuable as in the case of a rare disorder.

This is not a decision to be made lightly, but it is also not a decision to be made at the last minute. Tissues must be collected promptly, and prepared and preserved in a particular way in order to make them useful to examiners. It is important to ensure that a family and the family's providers understand what will have to be done, and in what time frame, in order to preserve the suitability of the body for autopsy.

In this area, advocacy organizations should encourage families to get support from the physician who will attend the dying individual. Even good, regular communication with providers may not prevent misunderstandings about a family's wishes to donate tissue from their loved one. It is important that a clear comprehensive protocol be conveyed and planned for by the family.

"We were dealing with a researcher at UCLA. I had made arrangements before Kapri passed away to send cell lines and tissue samples to him. We took my daughter off life support. Due to her condition and her chromosome disorder, we could not donate to a live person. Our cardiologist and doctors in Wisconsin knew what our choice was. Even an hour before we took Kapri off life support it was discussed again. They said it was not a problem. Before the autopsy, I talked with the pathologist and made it clear what we wanted done with her organs, since there were several different departments we wanted to share them with for research. I was told this would not be a problem, to store the cell lines, tissues, and other organs."

It seems straightforward, but even after all these conversations, Cyndi Bradley (Tetrasomy/Pentasomy Parent Support Group) discovered later that all the tissues were preserved in formaldehyde. This method preserves the tissues for dissection but prevents uses such as establishing cell lines or any other uses that require living tissue.

What You Can Do

Here are some steps you can take to improve communication and understanding with your providers so that your wishes for autopsy and tissue collections are respected.

Get support for your plans from the physician who will be attending the individual at the time of death.
Put everything in writing - and get it into the individual's medical chart. This includes your wishes, signed consent documents, and the specific destinations and preparation instructions for the tissues.
Enlist an assertive advocate for your cause - you need someone who will have your desires as their first task. This could be a case manager from the clinic where the individual was followed, or someone else who works inside the institution where the tissues will be collected.

One option is to use a harvesting/banking organization that both stores tissues for research and arranges to collect the tissues and transport them to its repository, such as Maryland's Brain and Tissue Bank.

» Education of Members, Providers, and the Public

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Maintained by the Genetic Alliance.
The Interactive Guide to Advocacy Groups was written by Sharon Fontaine Terry and Caitlin Burke, with contributions from Genetic Alliance members. The Interactive Guide to Building Advocacy Groups is made available under a Creative Commons license. You may make and share copies of this work for noncommercial purposes without modifications and with this acknowledgement included in full. More information is available at About the Interactive Guide to Building Advocacy Groups.

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SEPTEMBER 2004: This is a preliminary installation of the Interactive Guide to Advocacy Groups. We need your feedback. Make comments on specific pages (you may see error messages, but comments should still post), or send email. Is something missing? Can we make it easier to navigate? This Guide will change regularly over the next few months as we incorporate changes and fine tune the site. Thank you!

AN INTERACTIVE GUIDE TO BUILDING ADVOCACY GROUPS
Part II
Part I Part II Assessment Structure Resources Support Education Research Advocacy Part III	Autopsies and Tissue Collection Another difficult situation for families is deciding whether to make a loved one's body available for autopsy. Autopsy, once a routine practice in American medicine, is becoming rare, and there are few instances in which it can be more valuable as in the case of a rare disorder. This is not a decision to be made lightly, but it is also not a decision to be made at the last minute. Tissues must be collected promptly, and prepared and preserved in a particular way in order to make them useful to examiners. It is important to ensure that a family and the family's providers understand what will have to be done, and in what time frame, in order to preserve the suitability of the body for autopsy. In this area, advocacy organizations should encourage families to get support from the physician who will attend the dying individual. Even good, regular communication with providers may not prevent misunderstandings about a family's wishes to donate tissue from their loved one. It is important that a clear comprehensive protocol be conveyed and planned for by the family. "We were dealing with a researcher at UCLA. I had made arrangements before Kapri passed away to send cell lines and tissue samples to him. We took my daughter off life support. Due to her condition and her chromosome disorder, we could not donate to a live person. Our cardiologist and doctors in Wisconsin knew what our choice was. Even an hour before we took Kapri off life support it was discussed again. They said it was not a problem. Before the autopsy, I talked with the pathologist and made it clear what we wanted done with her organs, since there were several different departments we wanted to share them with for research. I was told this would not be a problem, to store the cell lines, tissues, and other organs." It seems straightforward, but even after all these conversations, Cyndi Bradley (Tetrasomy/Pentasomy Parent Support Group) discovered later that all the tissues were preserved in formaldehyde. This method preserves the tissues for dissection but prevents uses such as establishing cell lines or any other uses that require living tissue. What You Can Do Here are some steps you can take to improve communication and understanding with your providers so that your wishes for autopsy and tissue collections are respected. Get support for your plans from the physician who will be attending the individual at the time of death. Put everything in writing - and get it into the individual's medical chart. This includes your wishes, signed consent documents, and the specific destinations and preparation instructions for the tissues. Enlist an assertive advocate for your cause - you need someone who will have your desires as their first task. This could be a case manager from the clinic where the individual was followed, or someone else who works inside the institution where the tissues will be collected. One option is to use a harvesting/banking organization that both stores tissues for research and arranges to collect the tissues and transport them to its repository, such as Maryland's Brain and Tissue Bank. » Education of Members, Providers, and the Public Privacy Policy - Disclaimer - Funding Maintained by the Genetic Alliance. The Interactive Guide to Advocacy Groups was written by Sharon Fontaine Terry and Caitlin Burke, with contributions from Genetic Alliance members. The Interactive Guide to Building Advocacy Groups is made available under a Creative Commons license. You may make and share copies of this work for noncommercial purposes without modifications and with this acknowledgement included in full. More information is available at About the Interactive Guide to Building Advocacy Groups. Send feedback about the Interactive Guide. SEPTEMBER 2004: This is a preliminary installation of the Interactive Guide to Advocacy Groups. We need your feedback. Make comments on specific pages (you may see error messages, but comments should still post), or send email. Is something missing? Can we make it easier to navigate? This Guide will change regularly over the next few months as we incorporate changes and fine tune the site. Thank you!	« Dealing with Death » Education of Members, Providers, and the Public