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:
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.
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:
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.
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.
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.