Talking with your family about PGT-M
Embarking on the journey of preimplantation genetic testing for monogenic disorders (PGT-M) can be both exciting and anxiety-inducing. PGT-M offers a potential option for your future family, but it also raises questions about how to obtain the necessary genetic information. If the thought of requesting DNA samples and genetic test reports from your relatives makes you uncomfortable, you're not alone. In this blog, we'll discuss strategies to navigate PGT-M without feeling uneasy about involving your family members.
Understanding PGT-M
Preimplantation genetic testing for monogenic disorders (PGT-M) is a genetic test performed on embryos that are created through the process of in vitro fertilization or IVF. It evaluates for a specific genetic variant that a person or couple could pass on. PGT-M provides information on which embryos have the genetic variant and which do not. With this information, the family can decide which embryos to transfer.
The Dilemma of Seeking Family Involvement
Involving your relatives in the PGT-M process can provide valuable genetic information and sometimes is necessary in order to design a PGT-M test. Some individuals might feel hesitant or uncomfortable about requesting DNA samples or genetic test reports from family members due to privacy concerns, strained relationships, or cultural reasons. Here are some strategies to consider if you find yourself in this situation:
1. Genetic Counseling: Begin by consulting a genetic counselor. They can help you explore your options and provide guidance on the importance of involving family members, while also addressing any concerns you might have. If you are fuzzy on why you need your relative’s DNA and/or information, then the genetic counselor can review the reasons why.
2. Explaining Your Intentions: If you're comfortable, have an open and honest conversation with your family about your decision to pursue PGT-M. Explain your reasons and emphasize that your intention is to make informed reproductive choices, not to invade their privacy.
3. Reassure Privacy: If privacy is a major concern, assure your family members that you will handle their genetic information with the utmost care and will only use it for the purpose of PGT-M. You can check with the lab as well to see how they handle this information and relay this back to your relatives. Labs are bound by HIPPA and are required to pay special attention to patient information.
4. Professional Mediation: In some cases, involving a neutral third party, such as a genetic counselor or your nurse, can help facilitate conversations between family members about sharing genetic information. They may also be able to request records from the institution where your relative had genetic testing, yet your relative will need to sign a medical release to allow for this to happen. This approach may take a few weeks as the healthcare provider may be sent to the hospital’s medical record department, who fulfills the order.
5. No Family Member Approach: If obtaining genetic information from family members remains challenging, ask the genetic counselor at the lab if your case is amenable to a “no family member approach”. The “no family member approach” is not always the ideal or available option, so it is reserved for when there is no way of involving family members.
6. Respect Boundaries: It's important to respect the boundaries and decisions of your family members. If someone is uncomfortable providing genetic information, try to understand their perspective and explore other options.
7. Special Consideration: If a relative is nearing the end of their life, it may be worthwhile to have the discussion of banking their DNA and obtaining consent from them or their care provider.
Conclusion
Pursuing preimplantation genetic testing for monogenic disorders is a personal decision that comes with its own set of challenges. Seek the guidance of genetic counselors and professionals who can help you navigate the complexities of PGT-M while respecting the privacy and feelings of your family members.
Here are some quick paragraph to share with relatives when explaining the need for their DNA samples and genetic test reports:
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Hey there,
I hope you're doing well. I wanted to share something important with you—I'm considering a process called preimplantation genetic testing for monogenic conditions (PGT-M) to reduce the possibility of passing on the genetic variant related to our family’s inherited neurodegenerative condition. The idea is to have the chance for a pregnancy without passing on the variant.
For this to work, the lab I'm working with needs a bit of help. They're requesting your DNA sample and genetic test report. Unlike the previous genetic testing you had, this one is tailored specifically to our family's DNA. Just to clarify, the lab won't redo your testing or use your DNA or reports for anything else—it's solely to design the PGT-M test.
Once they have your genetic test report, they'll send you a test kit to your home. It comes with instructions on how to use it and how to send it back to the lab.
Thank you so much for considering this. Your help means a lot to me. Let me know if you have any questions or concerns—I'm here to chat about it whenever you're ready.
_______________________________________________________________________________________________________________________
Hi,
As you may already know, I am planning to pursue the option of testing embryos for the family’s genetic variant called preimplantation genetic testing for monogenic conditions (PGT-M). This option allows for the possibility of having a pregnancy without the chance of passing on the genetic variant.
In order to start this process, the laboratory I am working with is requesting your DNA sample and genetic test report. The lab has to design a test specifically to our family’s DNA, unlike the genetic testing that you had in the past, which is an off the shelf test. The lab will not be redoing your testing and will not be using your DNA or reports for any other purpose but to design a PGT-M test.
Once they have your genetic test report, they will then send a test kit directly to your home. Instructions will be provided in the kit and how to ship the kit back to the lab with no charge to you.
I know it is a lot to ask, and I really appreciate you considering this. Please let me know of any questions or concerns.
