Should any Parent genetically alter their child?

Should any parent genetically alter their child?

It's a big question to start writing about. There are seemingly lots to consider, including whether we are crossing a certain ethical line.  I'm in no way experienced, qualified or egotistical to believe it's something I could perfectly cover in one post. However, it is a subject that’s been on my mind for the last few months.

With current leaps in science and technology the idea of creating a perfect child is no longer pure science fiction. Genetics and “designer babies” are topics that often arise.

I know new parents are always excited to see how the genetic lottery has panned out and what exactly their child will look like or how their personality will be.

Such conversations as:

“I wonder if they will have my colour eyes?” or “I hope they don't have my shaped nose".

I know when we were expecting we had the same conversations. We always hoped neither would inherit my shocking short height but would get the tall gene that the boys mum’s (male) family seem to have.

When William was born there was no doubt he was my son. The likeness was incredible. When we were expecting James we even joked that we hoped he would come out looking more like his mum so she could have a “mini me”.

Both boys show a strong family resemblance. There is no doubt they are brothers and both over the years have shown physical and personality traits of both of us.

But would I change them? Would any parent once they had a child?

I am sure that most parents would instantly cry “No! Of course not, I love them for who they are”. For that very reason I would agree. I look at my two and would never want them any different. Except that isn’t completely true. Despite my undying love I would change something about them.

Initially most people think about “superficial” changes when they consider the genetics of children. However, what if they inherited a genetic illness and disease? Would anyone as a parent change their child then?

Muscular Dystrophy is a genetic condition.

Different muscular dystrophies follow various inheritance patterns. It can be inherited by individuals as an X-linked disorder, a recessive or dominant disorder and furthermore, it can be a spontaneous mutation which means errors in the replication of DNA.

Before becoming parents we knew we would have prior knowledge and subsequently prior warning if our children had inherited it. We could seek medical help, train muscles, build up where we could so the progress of their illness would be less than mine and we also knew that there was the hope that medical advances would happen.

Two things have happened.

1. William has started showing early signs of having Muscular Dystrophy. He has similar shape and movements as I have and you can really see the difference in his shoulder blades (the scapulo part of Facioscapulohumeral dystrophy)

2. Before Christmas it was announced that there is a “potential” treatment for a strand of Muscular Dystrophy that potentially and positively impact quality of life and alter the course of disease in children. Furthermore, it is proprietary gene therapy candidate of a one-time treatment for SMA Type 1 (Spinal Muscular Atrophy) and is designed to address the monogenic root cause of SMA and prevent further muscle degeneration by addressing the defective and/or loss of the primary gene.

This treatment was announced at the start of the year and to be honest I am still unaware of how I feel about it. The combinations of the two above points have raised many conflicting and complicated feelings.

I don’t want either of my beautiful boys to go through what I have, am still experiencing and potentially will further down the line. I don’t want all hopes and dreams to be dismissed because they're no longer physically viable. I don’t want them to go through the pain I go through all day, every day. I don’t want them to lose different physical functions, fall, feel trapped by their body or fear what the future will hold.

I am sure every parent would feel the same.

Muscular dystrophy like a lot of degenerative and vile diseases enters people’s lives, rips it apart and turns it upside down.

For me when it comes down to genetically altering children I look back and would consider it as a strong possibility if it avoided what we now know would happen. This new therapy treatment is obviously a hope for many individuals with Muscular dystrophy and again focuses on altering what the gene does.

I wouldn’t be one to pick and choose eye colour and look for a perfect child. I also know that my experience has shaped me into the person that I am today and, although difficult at times, I live a happy life. Yet, if it comes down to offering it or a similar treatment to William, or James, so they would live without suffering then I would without a doubt.

So what would you do in my situation? Would you genetically alter your child?