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3 July 2019

Epilepsy Society submits response to Government's Online Harms White Paper

Epilepsy Society has submitted its response to the Online Harms White Paper, calling on the Government to include safeguarding measures for people with photosensitive epilepsy when they are using social media platforms such as Facebook, Instagram and Twitter.

The Online Harms White Paper sets out Government plans for a world-leading package of measures to keep UK users safe online. And the charity wants the plans to include legislation and regulations around photosensitive epilepsy.

How many people have photosensitive epilepsy

Around 20,000 people in the UK have photosensitive epilepsy where seizures are triggered by flashing lights or contrasting, quick-fire imagery.

Epilepsy Society is receiving an increasing number of complaints from people with photosensitive epilepsy who are vulnerable to seizures from shared online content with fast paced videos, animations and flashing lights.

Alongside this, malicious content is being 'tagged' with keywords around epilepsy to deliberately target those with the condition and induce a seizure.

What Epilepsy Society is asking the Government to include

We are asking the Government  to introduce legislation that will safeguard people with photosensitive epilepsy online by:

  • amending, or clarifying, the definition of assault in the criminal law to include the knowing or careless dissemination of online material capable of causing a seizure.
  • including this behaviour within the future definition of "online harms"
  • enabling the imposition of significant fines on  social media companies - Facebook, Twitter, Instagram, Whatsapp and YouTube -that do not take all reasonable steps to prevent such material being transmitted on their platforms.

We are also asking the Government to:

  • seek information from social media companies, the police and Crown Prosecution Service about the number of complaints of this behaviour that have been made to them; and issue clear guidance that these are to be seriously considered for prosecution going forward
  • consider the establishment of a levy upon social media companies to fund the development of algorithms that will filter this material, including the tailored development of the equivalent of the Harding Pattern and Flashing Image Analyser which is used to test the safety of footage for broadcast and games.

'Social media should be more like a National Park and less like the Wild West'

Clare Pelham, Chief Executive at Epilepsy society said: "Traditional television content is well regulated by Ofcom with warnings being given both audibly and visually before any flashing images are shown.

"Regulating online content in a similar way would be extremely challenging, if not impossible. Social media is, by its very nature, informal and user-generated.  That is its joy and its danger.  But it needs to more like a National Park and less like the Wild West.  Some things that cause harm should be banned.  And that includes content that could trigger a seizure for someone with photosensitive epilepsy.

"For many people with epilepsy, social media offers a life line, enabling them to connect with others who share an understanding of the issues that accompany a life punctuated by seizures.

"People affected by the condition can offer each other 24-hour peer support, with shared experiences helping to lessen the loneliness of the shared condition. But people must feel safe online especially when they are in their own homes.

"I am sure that the social media giants will find willing volunteers among their socially-conscious staff with the right expertise to ensure their platforms are safe, inclusive places to share content, ideas and friendship, without any fear of harm."

Find out more

Read about Epilepsy Society's campaign to safeguard people with photosensitive epilepsy online.