The BBC published an article couple of days ago that posed the question: Should a person’s hereditary disability stop him from having a baby?

Jono Lancaster, the young man whom this story was based on,  was born with a rare genetic condition – Treacher-Collins syndrome. He is 26 years old now and is quite happy with his looks. But the genetic disorder affected the way his facial bones developed in the womb. He has no cheekbones or external ears and has suffered years of bullying and endless visits to the hospital. A day after he was born, his parents even considered to give him away for adoption.

Jono and his long-term girlfriend, 20-year-old Laura Richardson have been together for four years. They are considering having a child of their own. The doctors have stated that there is a 50-50 chance that their baby will be born with the same genetic condition.

A genetic dilemma

Jono had always thought he would adopt until he met Laura. Now he is not ruling out having children. He dreams of bringing up his child lovingly like any parent would. Laura is really passionate about having a child of her own instead of adopting somebody’s child.

They recently purchased a house together and are mulling over the idea of getting married and having children. Jono is not sure about what kind of life his child would have, if at all he decided to go ahead. Would the child have to undergo all things he went through?

Jono is still weighing the pros and cons of having a baby. And he believes it’s an agonizing experience to make a decision. The big debate in his head is how he can knowingly put his own child through potential suffering, especially when he knows that there’s a good chance of passing his condition on to the child.

Once he makes a decision, Jono is determined to go through it all and not abandon the idea midway.

While the doctors were successful in locating Jono’s abnormal gene, the couple’s only option now available is to consider IVF with pre-implantation genetic diagnosis (PGD).

Ethical and moral fears

Pre-implantation genetic diagnosis (PGD) is a controversial procedure, raising numerous societal questions. From a religious and ethical perspective, testing embryos for genetic disorders and implanting the best one in the womb, is frowned upon.

Dr Christine Patch, a genetic counselor at Guy’s and St Thomas’ hospital believes that couples like Jono and Laura need to given sufficient information and be made aware of the choices to help them make a decision that is right for them.

Jono and Laura have been meeting parents who have one of the many genetic conditions to explore the available options that include IVF and PGD.

Planning to become a parent is a big decision in itself, but having a genetic condition that could be passed down to your child is a dreadful thought. It is a very difficult decision for people like Jono to make. But living with the condition himself, he knows more than anybody else how it is to live with Treacher Collins syndrome. And only he, along with his partner, can make the right decision.

However, what may seem the right decision to make at a point in time, might in hindsight be a completely the wrong one because guilty conscience may in time start to become too overbearing. A couple that decides to have a child might find problems faced in the future by that child might start subjecting themselves to believing that, in hindsight, the wrong decision was made which then can lead to the onset of other problems such as depression as it may get imprinted in their minds their selfish attitude as the reason for having this child. Equally, a person could live their life in regret for not trying for a child of their own, especially if there is a chance the genetic condition may not pass on or that it may not be as severe.

Facts about Treacher Collins syndrome

Treacher-Collins syndrome or TCS is a genetic disorder that is caused by a flawed protein called treacle. The condition is inherited and more than fifty percent of all cases are caused due to new gene mutations as there is no family history of the disease. This condition is generally evident at birth and cannot be prevented.

About one in every 10,000 babies is born with Treacher Collins syndrome in the UK. It is difficult to predict the outcome of how severely a child could be affected. Although most children with Treacher Collins syndrome usually have normal intelligence, many of them suffer from problems with hearing, breathing and eating.

1) National Center for Biotechnology Information
2) British Broadcasting Corporation (BBC)