Canadian mom outraged after genetic screening company uses photo of daughter with Down syndrome

Hilary Hagerman
Shine from Yahoo Canada

A B.C. mom is fighting back after a photo of her young daughter was used by a Swiss bio-medical company on a poster for a prenatal testing kit.

Via Christie Hoos/So Here's Us...

In March, Christie Hoos wrote an entry on her blog So Here’s Us…. In the entry, she wrote about raising her daughter Becca, who has Down syndrome and who is also battling leukemia.

“I wouldn’t have it any other way,” wrote the Langley-based mom in the entry that included three photos of her daughter. “My daughter is an individual, not a stereotype. She is her own unique person.”

Last week, Hoos was with her daughter at the Pediatric Oncology Clinic when she received a message from a friend. One of the photos she had posted of Becca had been taken without permission – and it was now being used in Spain to advertise for a prenatal genetic testing kit by Swiss bio-medical company Genoma.

“To know that this happened infuriated me, but when I saw it with my own eyes…her sweet face on that ugly banner, it broke my heart,” Hoos wrote in another blog entry. “While my girl courageously fights for her life, the company questions whether she has a life worth living. How dare they?!”

Hoos further explains that the offensive campaign had already received a flurry of complaints from parents and disability rights activists in Spain – including parents asking how a mother could allow her daughter to be photographed for the campaign.

According to her blog, the photo was illegally obtained by a stock image website who had been distributing the photo for free.

Hoos said she felt “guilty” for putting her daughter’s photo online in the first place.

“I didn’t prep it for the web properly,” she wrote. “I failed to protect her. Until I realized I did nothing wrong. They broke the law. This heartless company that used my daughter’s photo without our consent, or that of our photographer.”

“We downloaded this photo from an image bank website offering it in an apparent legal way,” wrote Genoma’s president and CEO Gualberto Ruana in a statement on the company’s website.

According to Genoma, they have stopped using the photo and are seeking legal action against the stock photo site. Hoos and her husband Glen are also planning to take legal action.

In an update to her latest blog entry blog, Hoos wrote that the “Down syndrome” page of the stock photo website, which she says included her photo and at least two other stolen pictures, has been shut down.

"I can't tell you how much I appreciate the efforts of computer savvy strangers driven by no agenda of their own, only a desire to right a wrong," she said.

"Where initially I considered taking all our photos offline, deleting my social media accounts and hiding in my house for the next 10 years, now I’m determined to weather the storm," she continued. "We will not flinch. We will not hide. My daughter is beautiful and her life is worth celebrating."