Securing & Banking DNA

Securing & Banking DNA after SUDC

The SUDC Foundation can help you with this entire process if you choose to pursue DNA banking. However, it does require a period of approximately 4 to 6 weeks during which you will need to be available for communication with the Foundation to complete the process.

When possible, the SUDC Foundation encourages you to bank your child’s DNA to protect your ability to pursue more information as clinical testing advances and research options improve.  Securing a genetic specimen (DNA) from your child may provide opportunities for:

  • genetic testing to uncover specific cause of death and appropriate testing of family members
  • genetic testing to rule out specific causes which may decrease the family’s anxiety
  • storing DNA sample to allow for participation in current or future research

Knowing how much DNA is available and the quality of it will also allow you to make informed decisions on if and when it is used.

What You Need to Know

What kind of sample is needed to extract DNA?

In order to bank your child’s DNA, you will need a biological specimen from him or her that contains viable DNA. Some options include, but are not limited to:

  • Your child’s newborn screening card. States vary in the length of time for which they retain these cards.  You can contact the state’s newborn screening lab in which your child was born to 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 your child’s birth
  • Specimens retained during the autopsy, which may or may not be viable. The type of preservative and storage method used can affect the quality of the DNA.  Fresh frozen tissue and blood in EDTA is preferred but blood spot cards may contain a very small amount of viable DNA.  Other potential sample sources must be evaluated on a case-by-case basis.

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

Each office has a different policy that governs the length of time a sample is retained. When that time is reached, samples are disposed of. To ensure the best chance for you to retain your child’s sample, we suggest you ask the office what samples it has, how long they will be stored, how they are being stored and what preservatives are used.

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

You can find many private labs through a simple internet search. The SUDC Foundation refers families to Prevention Genetics because it offers a very cost-effective opportunity for DNA banking. The cost (as of June 2019) is approximately $169* for the extraction and storage of the DNA for a period of 50 years. 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.

*Additional fees apply for other types of samples. Please check with Prevention Genetics for pricing

*For SUDC Families Only- If financial hardship for DNA banking exists, please contact the SUDC Foundation.

What is the process for banking DNA?

The SUDC Foundation is here to help with any or all of this. We know banking your child’s DNA can be emotionally difficult and logistically complicated. review the steps below and contact the SUDC Foundation when/if you want any assistance or with any questions.

1. Contact the medical examiner or coroner to learn what samples are available, how they are stored (including temperature) and what preservatives, if any, have been used. We understand having these discussions about your child can be difficult, so please let the SUDC Foundation know if it can help collect and evaluate this information.

2.  If it is likely there is a viable sample, contact your medical examiner’s or coroner’s office to inform them of your desire to bank a genetic sample from your child for family screening and future research and ask about its policy and process for doing so. Some offices may require a court order, but most ask the request in writing from the next of kin to authorize release. This can usually be granted only after the case investigation is completed. It is helpful for them to know it is not for legal proceedings.

3. Fill out the proper contract agreement from the DNA banking lab you choose. Keep in mind most are written with living subjects in mind. The “depositor” is the child who died.

4. Once the lab receives your contract and sets up your account, contact your medical examiner’s or coroner’s office to request transfer of the specimen to the DNA bank. It is VERY important that the sample be shipped at the same temperature it is stored at the medical examiner’s or coroner’s office. Follow the guidelines mentioned above to assist in fulfilling your request and maintaining the viability of the sample.

5. Once DNA banking is complete, the company will mail you a letter with information regarding your banked DNA and a copy of your agreement.

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

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