Charlie Gard - Culture, Commerce, Eugenics

I’m sure many of you would be familiar with the case of Charlie Gard, who – if he survives until then – will turn one on 4 August.

For those not aware of his case, Charlie suffers from a rare inherited mitochondrial disease referred to as MDDS, a condition which has kept him in hospital and ventilator-dependent for the past 10 months.

Charlie’s condition is grave.  Not only is he ventilator-dependent, he has weakness in his muscles which prevents him from moving his arms and legs; indeed he is so weak that he does not even have the muscular strength to open his eyes, meaning he is not learning to see.  While Charlie is not brain dead, he has no sign of normal brain activity such as responsiveness, interaction or crying.  And he is deaf.

While no treatment is available in the UK, there is a doctor in the USA who is willing to treat Charlie with something known as nucleoside therapy which, while never tested on anyone with Charlie’s specific condition, has been found to have some limited benefit in similar cases.  But even this doctor has admitted that “it is very unlikely that he will improve with that therapy.”

Despite this lack of confidence in the outcome, the doctor will provide the nucleoside therapy.

Charlie’s parents, through a crowdfunding effort, raised the funds to take him to the US for the treatment, but the UK hospital where Charlie is does not believe it to be in his best interests, and that instead, the best thing to do for Charlie would be to remove the ventilator, palliate him and allow him to die.

The dispute meant that a court was asked to decide what was, in fact, best for Charlie.

The court decided that Charlie’s best interests would be to have the ventilator switched off and he be allowed to die. The court overruling a parent’s decision about the treatment their child receives is uncommon, but not unheard of. For example, courts have been called upon to overrule the decision of a Jehovah’s Witness parent to refuse a blood transfusion for their child, and are sometimes asked to confirm that an agreed course of action between parents and the hospital is indeed in the child’s best interests.

Whether we agree with it or not, the courts have long had a role in supplanting their decisions for those of the parents, but that usually happens where the child’s life is at risk and the court is stepping in to save it. Charlie’s case is different because obeying the court’s decision would result in his death, so this is new territory.

I have good arguments on both “sides” of this debate.  Catholic teaching does not require extraordinary measures to be taken or unduly burdensome treatment to be provided to a patient and, if the nucleoside therapy is either or both of these, then removal of the ventilator could be morally licit.  But nor does Catholic teaching restrain us from taking extraordinary measures (unless those measures in themselves are against the dignity of the human person), so treating Charlie with nucleoside therapy could also be morally licit.

But I think we also need to look a little beyond the Charlie Gard case in isolation and to the eugenic and commercially-motivated mentality which has pervaded the UK culture for far too long.

I’ll give you just one example of this.

In his judgment, Justice Francis noted that at one stage, the hospital “got as far as deciding to apply for ethical permission to attempt nucleoside therapy here,” but that by the time the decision was made, Charlie’s condition had deteriorated to such an extent that the treatment would have been useless anyway.

The reason the hospital did not already have permission to attempt nucleoside therapy is an example of the eugenic mentality which surrounds these kinds of diseases.

While the DNA of a baby is mainly contained in the nucleus of a cell, there is a small amount of DNA in the mitochondria located in the part of the ovum outside of the nucleus.

It is from this mitochondria that diseases like Charlie’s are caused.

Late last year, we looked at the UK Government’s approval a controversial form of IVF which would address this through the creation of three-parent babies.

The three-parent embryo is made by first creating two embryos through IVF and removing the nuclei of both. The nucleus taken from the fertilised egg with “unhealthy” mitochondria is placed into the “healthy” embryo which has just had its nucleus removed (and destroyed), resulting in an embryo with DNA contributed to by two women and one man.

What all of this scientific mumbo jumbo means is that the UK, instead of concentrating on treatments for mitochondrial disease has put its resources into preventing it by using artificial reproductive technologies to ensure no child suffering from mitochondrial disease is ever born in the first place. It is the very definition of eugenics and Charlie Gard’s case and likely death will be a result of a culture which has prioritised screening out of disability and disease to treatment of the same.

I wish Charlie’s case was a simple one involving a fight between the “good people” who want to try everything to save him and the “bad people” who simply want to let him die, because it would be an easier issue.

Unfortunately, the very same thing will happen to the next “Charlie” unlucky enough to be born in the UK, unless there is a change in its culture and the application of its medical resources—and cultural change is much harder. If any good can come from Charlie’s case, hopefully it is that it will be an impetus for such change.

Monica Doumit, catholicTalk contributor


Friday, 21 July 2017 06:52 Written by 


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Disclaimer: The opinions expressed in CathTalk blog are those of the authors and do not necessarily reflect the opinion of all members of that of the Catholic Archdiocese of Sydney.