Securing and Banking DNA after SUDC

Securing and Banking DNA after SUDC

The SUDC Foundation retains a Family Advocate on staff to help you with this entire process if you choose to pursue DNA Banking. This is not something you have to do on your own. However, there is a small time commitment of approximately 4 to 6 weeks in which you will need to be available for communication with the Foundation to complete the process.

If available to you, SUDC encourages the banking of your child's DNA to provide you with options to pursue more information about your child's death. As clinical testing advances and research options improve, you may want to access these opportunities. Securing a genetic specimen (DNA) from your child may provide:

  • the opportunity for genetic testing to uncover specific cause of death and appropriate testing of family
  • the opportunity for genetic testing to provide negative results - which may assist in decreasing some anxiety
  • the opportunity for storing a genetic specimen -banking DNA
    • Instill hope for cases that currently defy understanding
    • Allow for participation in present or future research
    • Allow families to benefit from potential benefit of future discoveries
Knowing how much DNA is available and the quality of it, will allow you to make informed decisions on its use.

 

What kind of sample is needed to extract DNA?

 A biological specimen from your child that contains viable DNA. Options include but are not limited to: 

  • Your child's newborn screening card (States vary in how long these are retained. You can contact the state newborn screening lab where your child was born and find out if it is available to you. Contact information for all state labs are available via the Save Babies through Screening Foundation's webpage.)
  • Banked cord blood from the child's birth
  • Specimens retained during the autopsy may or may not be viable. The type of preservative and  storage can effect the quality of the DNA. Preferred examples include: Fresh frozen tissue and blood in EDTA. Blood spot cards do contain viable DNA but in a very small amount. Other samples have provided good DNA extraction as well, but need evaluation on a case by case basis.

How do I know if the Medical Examiner or Coroner has a sample that will be viable?

Every office has a different retention policy and when that time is reached, samples are disposed of. Asking the office what samples they have, how long they store them, how they are being stored and what preservatives they are in are helpful in assessing what sample might lead to the best DNA extraction results.

Where do I bank a genetic sample for the extraction of DNA?

Many private labs exist and are readily available through web searches. We have recently worked with Prevention Genetics, who offer a VERY cost effective way of banking DNA. As of Jan 2016, they charge* about $140 for the extraction and banking of a DNA blood sample for 50 years. (Additional fees apply for other types of samples. Please check with PreventionGenetics for pricing). Parents have complete control regarding the withdrawal/transfer of any portion of the sample for clinical tests, research etc. SUDC assist families in this process as a service, but we have no control or access to any material that is banked. SUDC has no financial agreement, relationship or benefit from working with Prevention genetics and we are happy to assist families with any lab they choose.
*For SUDC Families Only- If financial hardship for DNA banking exists, please contact the SUDC Foundation.

How do I actually accomplish banking a DNA sample?

Note: The SUDC Foundation is here to help with any or all of this. This is emotionally difficult and logistically can be complicated. Read through the below and contact SUDC when/if you want any assistance or if you have any questions. This is a recent option available and new to most professionals as well.

1. Attain the information on what samples are available, how they are stored (including temperature) and what preservatives, if any, they are in. This can be the hardest part as it is so hard to have these discussions about your child. Let SUDC know and we can help you collect and evaluate the information for you if you like.

2.  If it seems like there might be a viable sample, contact your Medical Examiner' or Coroner's office and tell them you want to bank a genetic sample from your child for the purposes of family screening and future research. It is helpful to let them know it is not for legal proceedings. Ask them their policy of the release of specimens for your purpose. Some offices have required a court order, while most ask for a letter in writing from the next of kin authorizing its release. This is usually granted only after the case investigation is completed.

3. Fill out the DNA Banking Lab contract agreement  for the lab you choose. (Prevention Genetics DNA Banking Contract Agreement). Keep in mind it is written with living subjects in mind. The depositor should be listed as the child who died. You don't need to order a "kit" for a postmortem sample. The "representative" would be the parents. Fill out an additional page for 'representative" to list each parent. Mail this in with your payment. Keep a copy and email one copy to SUDC if SUDC is helping to facilitate the transfer with the Medical Examiner or Coroner office.

4. Once the contract is received by the DNA bank and your account is set up:  Contact your Medical Examiner or Coroner office to let them know that you would like them to move forward on the transfer of the specimen to the DNA bank. It is VERY important that the sample be shipped at the same temperature it is currently be stored at by the Medical Examiner or Coroner office. Follow the guidelines in this document to assist them in fulfilling your request and maintaining the viability of the sample. 

5. Once the banking and extraction is complete, you will receive a letter stating if the sample was viable. At that time, the amount and quality of DNA will be known to allow the family information to make future decisions on its use.

If you have any questions, please contact The SUDC Foundation for assistance. Again, The SUDC Foundation is here to help with any or all of this.