DNA Banking for the Future
When faced with the impending loss of a loved one due to an inherited neurodegenerative condition, the idea of asking them or their caregiver to bank their DNA might seem like the last thing you’d want to ask about. However, one way to view this ask as a way for your loved one to meaningfully contribute to your potential future family and leave a legacy. Each family and their views will certainly differ with this idea. It may be that your relative’s DNA is necessary or advantageous in order to pursue PGT-M test design. In this blog post, we'll explore the concept of DNA banking for relatives diagnosed with an inherited neurodegenerative condition and the potential benefits it holds for PGT-M.
Understanding DNA Banking
DNA banking involves the collection, storage, and preservation of an individual's genetic material. This process ensures that their genetic information is safeguarded for future use, including research, medical advancements, and family planning.
The Importance of DNA Banking for PGT-M
DNA banking allows families to obtain a DNA sample of a loved one who has been diagnosed with an inherited neurodegenerative condition. This information can be critical for families considering preimplantation genetic testing for monogenic conditions (PGT-M) to prevent passing on the genetic variant related to the condition.
As discussed in previous posts, PGT-M is a unique assessment because it is specially designed for each family’s DNA. In some cases, in order to design the test, other relatives’ DNA will be necessary. While this may not be a requirement for everyone’s case, it may still be worthwhile to bank the DNA of your loved one in the event you plan to pursue PGT-M later or they are nearing the end of their life.
Timing does not always perfectly align. If you are not yet sure you’d like to pursue PGT and aren’t sure if your relative’s DNA will even be needed, it can still be a good idea to bank their DNA just in case. Maybe you know you’d like to pursue PGT-M, but your loved one may be passing away soon and you aren’t yet at the point in which the lab is requesting DNA samples from the family, DNA banking could be a good solution to this timing issue. You can also ask the lab what their solution could be in this case. Sometimes, if you are very close to pursuing PGT-M, the lab may take your relative’s sample earlier in the process.
Navigating the Process
Consult a lab that offers DNA banking. If you are working with a genetic testing lab for PGT-M already, contact the genetic counseling team to inquire of their recommendation of where to bank the DNA. The hospital that your relative most frequently visits may have DNA banking options. Otherwise, you can do a google search of “DNA banking labs”. One lab that is well known for its banking is Prevention Genetics. However, this is not the only lab available. Cost, logistics, and shipping are important factors to consider. You want to make sure the DNA banking lab is aware of your future plans to possibly use the DNA for PGT-M.
Openly discuss the decision with your relative diagnosed with the inherited neurodegenerative condition and the family. Respect their wishes and ensure they understand the purpose and potential impact of DNA banking.
Collection Process: DNA banking typically involves collecting a blood or saliva sample. The process is non-invasive and relatively straightforward. The collected sample is then processed and stored at the chosen DNA bank.
Conclusion
Banking the DNA of a relative will feel different for every family depending on relationships, family values and morals, timing, and experiences. DNA banking may feel like a meaningful way to preserve your relative’s legacy while potentially making a impact on future generations through PGT-M, or it may feel like a difficult ask at this time in life. By engaging in discussions with your relative and family members, the aim is to reach a decision that is most in line with the values held by all involved parties.
