Carter Snead discusses the Charlie Gard Case

The Tocqueville Program and Constitutional Studies Minor hosted a luncheon in the brand new Jenkins and Nanovic Halls last Friday as the first installment of the “Professors for Lunch” series. Professor of Law and director of the Notre Dame Center for Ethics and Culture O. Carter Snead delivered a talk entitled “Fighting for Charlie Gard: Ethics, Public Policy, and Pope Francis.” The event was also sponsored by the University Faculty for Life.

Snead began by laying out the background of the case of Charlie Gard, a British infant who passed away in late July after living with a very rare form of mitochondrial DNA depletion syndrome (MDDS).

The infant’s particular form of MDDS, Snead noted, has been diagnosed in only 16 people in the world. The parents, Chris Gard and Connie Yates, planned to take their son to the United States to receive an experimental treatment and raised over 1.3 million pounds to do so.

The case made international headlines after a dispute arose between Gard’s parents and the Great Ormond Street Hospital (GOSH), which denied the parents’ requests to release their child. Court battles ensued, and the case was taken all the way to the European Court of Human Rights where Charlie’s parents were ultimately denied the opportunity to get their son experimental treatment.

Both President Trump and Pope Francis weighed in on the side of the parents, tweeting out their support to millions of Twitter users and, in the Pope’s case, offering to provide Gard care at Bambino Gesu, a children’s hospital located in Rome.

Following this explanation of the background of the case, Snead discussed the way U.K. law differs from U.S. law regarding these types of medical decisions.

Unlike U.S. courts, U.K. courts are vested absolute authority to make decisions regarding a child’s best interests once they have taken jurisdiction of a case. Snead explained that “… once the court takes … a case, the parents lose their authority, so effectively it somewhat is a termination of parental rights to make medical decisions, which is quite dramatic and quite different from [the U.S.] system.”

This system allowed for the outcome of Gard’s case, Snead explained, because “what the courts concluded here is that what is in [Gard’s] best interests is to discontinue life-sustaining measures because the life itself didn’t enjoy sufficient quality to warrant continuation. In fact, continuation of his life was positively harmful to him and contrary to his best interests.”

The court’s view of medical care focused on an idealized quality of life rooted in cognition and independence, in contrast with Pope Francis’ vision of medicine, Snead further said. This vision motivated the pope to express his full support of Gard’s parents.

Snead stated, “[Pope Francis] has embraced a vision of human identity and flourishing that regards all persons as equal in dignity and respect regardless of their condition or circumstances … Accordingly, he holds that the good of medical care should be applied to a patient as we find her, caring for her needs as they are now.”

Snead further elaborated on the basis of this view, pulling on long standing Catholic Social Teaching and contrasting it with the courts’ conclusions.

Snead continued, “It is contrary to the proper ends of medicine and the demands of love and justice to act or withhold action for the purpose of ending a child’s life that is perceived as burdensome. So this approach … is squarely contrary to [GOSH’s] approach and the approach of [U.K. law]. This approach rejects the notion that some lives are not worth living, and therefore we should terminate life-saving measures for the sake of ending that life.”

Following a brief conclusion, Snead engaged in a Q&A on topics such as abortion, parental rights, and socialized medicine as they relate to Gard’s case.

One attendee, senior Michael Krebs, came to the event with a loose understanding of the case, but he expressed his appreciation for Snead’s comprehensive look into the many issues it encompassed:

“I thought Snead’s lecture helpful and informative in presenting the facts of Charlie’s saddening case, the policies of the justice system in the United Kingdom, and a perspective on the story that emphasized the values of accompaniment, compassionate care, and the value of all human life—regardless of illness, ability, or disability.”

The next Professors for Lunch event is entitled “Debating Religious Liberty and Discrimination” and will be held Thursday, September 7 at 7pm. For more information, you can visit constudies.nd.edu.

Matt Connell is a junior studying marketing and constitutional studies. Contrary to what you might think, his dream job is not marketing the U.S. Constitution. You can contact him at mconnel6@nd.edu.