u/DaughterOfMadness

First of all, I'd like to say that English is not my first language, so I might make some mistakes while writing this. Please forgive me!

I have a genetic condition called Neurofibromatosis Type 1 (NF1), which causes multiple tumours to grow throughout my body. All of them are benign, and I developed this condition through a spontaneous gene mutation. This means that neither of my parents has the condition or passed it on to me. The affected gene normally produces a tumour suppressor protein that helps prevent cancer. Because of NF1, this protein does not function properly, which increases my chances of developing cancer. Currently, there is no cure.

Although my case is considered very mild, I was told from the age of ten that I would need to be very careful when having children so that they would not inherit the condition from me. There is a 50% chance that a child of mine would inherit the mutation and a 50% chance that they would not. If they do inherit it, they may develop either a mild form of NF1 or a very severe one, which can cause major malformations and significantly compromise their quality of life.

In addition, people with NF1 are more susceptible to developing several types of cancer, which can also be more resistant to treatments such as chemotherapy. Around 40% of women with NF1 will develop breast cancer during their lifetime, and there is also a specific type of tumour called Malignant Peripheral Nerve Sheath Tumor (MPNST), which is extremely aggressive.

I've been reading about oncogenetics and also learned about other gene mutations that affect tumour suppressor genes. Two well-known examples are BRCA1 and BRCA2, which are associated with breast, ovarian, and prostate cancer. Women with a BRCA1 mutation may have up to an 80% lifetime risk of developing an aggressive form of breast cancer, while BRCA2 mutations can raise that risk to around 70%.

If a woman wants to get pregnant and has a family history of breast cancer while carrying one of these mutations, genetic testing and embryo selection should be recommended to her, and I do not believe this should be considered eugenics. If she has the possibility of preventing her children from inheriting a genetic disorder that could lead to cancer, she should be able to make that choice without being accused of supporting eugenics.

Let's take another example: cystic fibrosis is caused by mutations in the CFTR gene and is inherited recessively from both parents. If both parents carry the mutation, there is a 25% chance that their child will develop the disease. As we know, cystic fibrosis can be diagnosed in newborns and is associated with reduced life expectancy and quality of life. Although modern medicine has significantly improved both survival and treatment outcomes for people with CF, the disease is still serious.

If an adult who has a CFTR mutation and lives with cystic fibrosis decides to have children with someone who also carries the same mutation, genetic screening and embryo selection could prevent their children from inheriting the same disease.

What I am saying is that many people may call this view “eugenicist” or argue that I am implying that people with these conditions should not exist or should not have children. However, as someone who has an untreatable genetic disease and lives with a higher risk of developing cancer, I would never wish this upon my future children.

I understand what eugenics is, and I understand why some people may conflate it with what I am defending here. However, I am not saying that people with hereditary diseases should be forbidden from having children. I am simply arguing that, if possible, we should try to prevent our own hereditary diseases from being passed on to future generations.

This does not mean that children will be born perfectly healthy or that they will never develop cancer in their lives, since only around 5% to 10% of cancers are hereditary. However, it is still possible to significantly reduce the risk