Having Children While at Risk of Familial ALS
Knowing you are at risk of Familial ALS (FALS) and could pass an ALS-related gene alteration to your offspring may have an impact on whether and how you choose to have children.
This resource looks at some of the options available as you explore the ability to have children.
Genetic inheritance is when a parent passes on specific genes to their children. This explains why you received a certain eye color or height from the dominant genes of your biological parents.
In the case of ALS, this may or may not mean that a child will develop ALS in their lifetime. The pattern of gene inheritance in ALS varies depending on the specific gene involved, such as the ones we know of – SOD1, C9orf72, TDP43, FUS – and others yet to be discovered. Most cases are inherited in an autosomal dominant pattern.
What does that mean? It means that if at least one copy of the altered gene is passed down, it is likely to cause ALS. However, some people who have a familial ALS gene mutation never develop the disease. When people carry one of the known ALS genes but do not develop the disease, it is known as reduced penetrance. It is currently unclear why some people with a mutated gene develop ALS while others who also have it does not.
In other cases, F-ALS genes have ‘complete penetrance’. This describes disease-causing genes which always cause the disease to occur in carriers.
Ok, ready to pull up in your memory bank those Punnett squares you worked on in high school biology class? You see, there are other inheritance patterns, known as recessive or X-linked. Recessive inheritance is when genes from both parents are mutated. X-linked inheritance is when the gene mutation is located on the X chromosome. If you’re ready to dig deeper, you can read more about inheritance here. Or, watch a webinar on this from the Les Turner ALS Foundation here.
Deciding to have children while knowing you have, or are at risk of having, a gene mutation that may cause ALS is a personal, emotional decision. This decision may cause a debate among families affected by familial ALS. It is important to remember that everybody has a right to make their own choices.
Some people want to have children, but also want to reduce the risk of their children inheriting a gene mutation that may cause ALS. Technology and science have made it possible to explore several options available that may allow a child to be free of the risk of F-ALS, such as the following:
- Preimplantation Genetic Diagnosis (PGD) – testing embryos as part of an In Vitro Fertilization process.
- Prenatal Testing – testing the baby for a genetic condition via prenatal diagnostic tests such as chorionic villi sampling (CVS) or amniocentesis. There are no prenatal screening tests to tell if a fetus has ALS, only to tell if there is an increased risk for something.
- Egg/Sperm/Embryo Donation – using genetic material of a person not at risk of F-ALS.
- Adoption – becoming the permanent and legal parents of children that are not yours biologically.
- Fostering – becoming the legal guardians of a child. Sometimes this may be a temporary situation.
Some people may not want to have children for multiple reasons, including that they do not want to have a child at risk for ALS or have that child grow up in a family affected by ALS. Additionally, PGD, prenatal testing, adoption and other options mentioned above can be very expensive. However, it is important to remember that this is your decision. And remember, many people from Familial ALS families do move forward with having children without taking preventative measures.
If you would like to discuss your family planning options with a healthcare professional, contact your local ALS clinic (find your local clinic here) or clinical genetics department (find a genetic counselor here) where a genetic counselor can help guide you through this information gathering and decision-making process. They also may provide strategies to help you cope in difficult situations which may arise on your journey. You may want to do this with a partner, loved one or on your own. If you find you are seeking more support, you may want to continue the discussion with a mental health professional. We understand many mental health professionals do not have experience with ALS or genetic planning and encourage you to ask for a recommendation from your genetic counselor or neurologist. You can also speak with a social worker at your ALS clinic to find additional recommendations.
Les Turner has a webinar on Family Planning and ALS which can help you understand the factors that go into genetic testing and family planning.
The process of learning your genetic status and making decisions about your future can feel overwhelming and emotional. Connect with the I AM ALS Community Support team for one-on-one support and to meet with others who have been in your shoes.
The I AM ALS Familial ALS Community Team also hosts a monthly social hour. This social hour is open to anyone impacted by Familial ALS and is a great place to ask questions and learn from other people who are impacted by Familial ALS about their decision to have or not have children. Learn more and sign up here.
Source – The information on this page has been adapted from the Huntington’s Disease Youth Organization.
You might find these helpful:
Participating in ALS Research
This resource discusses the experience of participating in research for someone impacted by familial ALS.
Supporting Kids and Teens through ALS
This article from I AM ALS offers guidance from the nonprofit Wonders & Worries on how to talk to kids and teens about a serious diagnosis.