Ethics and PR: The Charlie Gard Case

If you’ve watched the news or picked up a newspaper in the last couple of months, you’ll be familiar with the tragic story of 11-month old Charlie Gard. The tot, who died on July 29, was born with a rare genetic disease, mitochondrial DNA depletion syndrome, (MDDS), that results in death in early childhood.

The variant that Charlie inherited affects many organs, principally the brain and muscles, depleting the tissue of the energy needed for them to function. He could only breathe through a ventilator. He couldn’t move, he was deaf, he suffered from severe epilepsy, and his vision was not developing normally. But the prognosis didn’t deter Charlie’s parents, Chris Gard and Connie Yates, from raising $1.8 million to fly him to the U.S. for experimental ‘nucleoside’ therapy, in a last-ditch attempt to save his life.

However, Great Ormond Street Hospital (GOSH), who were treating Charlie, opposed the treatment, claiming his illness was too advanced to benefit. This led to a complex legal dispute between Charlie’s parents, GOSH and the British courts, as to Charlie’s future. Three British courts ruled that further treatment would only increase Charlie’s suffering. US medical specialists disagreed with the British courts’ rulings, saying that the therapy wouldn’t worsen Charlie’s condition.

After five months, Chris and Connie ended their legal battle and baby Charlie’s life support was switched off a few days later.

Free advice?

The widely reported tragedy sparked heated debates about how the case was handled by the hospital and legal authorities, but it also raised a number of ethical questions. Aside from the issue of who should have the right to decide whether Charlie lives or dies, Charlie’s parents had an adviser, freelance journalist Alison Smith-Squire, to help them navigate their way through the complex media and legal landscape. Controversially she acted both as the family’s spokeswoman and as a journalist, who sold stories about them to the newspapers via her business, Featureworld.

Unlike others representing the couple, who did so pro bono, Smith-Squire profitted from their case, by allegedly demanding up to £1,000 from media organisations to use photographs from Charlie’s Facebook page and £1,000 for a TV interview with Ms Yates.

A question of ethics

This raised questions about how well the couple were guided and whether Miss Smith-Squire always acted in their best interests. On the one hand, she represented the family in public, handling their PR, comms and protecting them from the press, while on the other, she fuelled media interest by supplying the press with photos and stories about Charlie, via her business, Featureworld, that helps people to sell their stories to the media. But was she acting unethically? It could be said that when a person is acting as a PR, while also writing and selling stories, it crosses a line. It’s a conflict of interest, which makes it unethical.

When questioned about it, Smith Squire allegedly said, “what do you want me to do, do it as a charity?” she said. “I get paid for writing the story. That’s how I’m able to represent people for free. I’ve put in hours and hours for free for this family. It has taken over my life.” (paywall).


If PR practitioners are to show that we have a valid role to play in providing transparent, valuable, insightful and honest communications, we have to be ethical.

Thankfully, we have guiding bodies such as the CIPR and PRCA to help us.

The CIPR is an industry body that represents 10,000 PR practitioners in the UK. In response to the Gard case,  it reiterated its stance on the ethical responsibility of PR practitioners, and provided guidelines to benefit PRs and their clients. The guidelines state that ‘public relations professionals may work for their client for an agreed fee, or they may work pro bono. A CIPR member may not offer their services for free to the client, and then seek to monetise stories, information, images or other material by selling them to third parties.’

Bring in the pros

Successful public relations hinges on the ethics of its practitioners. When hiring a PR agent for your next campaign, make sure they’re a member of a professional body such as the CIPR or PRCA, which have ethical codes of conduct that must be followed.

Want to join the PR revolution? Call me now on +44 (0)77604 70309

I get you into the places that matter

The Times
Financial Times
Evening Standard