By Stefano Gennarini, J.D. | August 3, 2017
NEW YORK, August 4 (C-Fam) Charlie Gard’s tiny body was deprived of life two weeks before his first birthday, his ventilator was switched off after his parents, Chris and Connie, put up a fierce fight against the UK National Health Service that shocked the country and the world.
“I don’t think parents understand how few rights they have,” Paul Diamond told the Friday Fax. The well-known UK barrister who works religious freedom cases said Charlie’s story exposed a “gaping hole” in UK and European law, that is, the absence of parental rights.
When the hospital sued Charlie’s parents to switch off the ventilator of their disabled boy in March, it claimed it was in Charlie’s best interest to die. His parents, who never left his side, said Charlie was responsive, and the hospital admitted they had no indication that he might be in pain. The UK courts sided with the hospital.
Charlie suffered from a genetic disorder so rare it has only been diagnosed 16 times. The condition leads to muscular degeneration and brain damage, and is considered always to be terminal.
Since November last year, Charlie’s parents said they wanted to try a new experimental treatment. After stalling for months, the hospital said it was in Charlie’s best interests to die and eventually the hospital took the parents to court. The judge who heard the case said it was his duty to decide Charlie’s best interests, not his parents, and that Charlie should be left to “die with dignity.” The European Court of Human Rights agreed.
The “best interests” standard invoked by the hospital and judges to switch off Charlie’s ventilator is from the Convention on the Rights of the Child, the most widely ratified UN human rights treaty. It states that “In all actions concerning children, whether undertaken by public or private social welfare institutions, courts of law, administrative authorities or legislative bodies, the best interests of the child shall be a primary consideration.”
Diamond said the standard was de facto incorporated in UK law through a 1989 Act of Parliament and allows doctors in the National Health Service, as well as judges and other government bureaucrats, to challenge parental decisions on health care and other matters.
The British judge asked, “Some people may ask why the court has any function in this process; why can the parents not make this decision on their own? The answer is that, although the parents have parental responsibility, overriding control is vested in the court exercising its independent and objective judgment in the child’s best interests.”
Diamond explained that as a result of the “best interests of the child” standard there is no “deference to parental views” in the United Kingdom. “There is no concept that custodially fit parents can make decisions for their children. Even decisions that courts and experts disagree with.”
The United States alone has declined to ratify the UN treaty and efforts to pre-empt the UN standard include the Parental Rights Amendment, recently re-introduced in the U.S. Senate by Sen. Lindsey Graham. When the Holy See ratified the treaty it made a reservation that affirmed the “primary and inalienable rights of parents.”