Roxana Olivera is an award-winning investigative journalist based in Toronto. This article was originally published online on 28 March 2022 on New Internationalist and will be included in their March-April 2022 publication.
Somewhere out there, there is an old photograph of a very young child standing completely naked, showing the marked signs of a most unusual medical condition.
I met that child when she was well into her old age, one winter afternoon over a decade ago.
Mariana (not her real name) had just returned from the cemetery where her husband is buried. Dressed all in black, her hands clutching a small-change purse wrapped in a clear plastic bag, she regarded me warily when she saw me waiting by her front door.
‘I am not Mariana’, she protested when I greeted her by name. ‘I am her sister. What do you want from her?’
But I knew she was Mariana. There were dark circles under her droopy eyes, just as in the photo that had accompanied the news of her medical case several decades earlier. Her hands trembled as she tried to unlock the door to her crumbling plastic-roofed shack.
I explained that I had just finished reading a recent book about ‘her sister’ and that I only wished to speak to her about conflicting information contained in that publication, as I was conducting research about her medical condition.
Mariana listened in perfect silence, eyeing me suspiciously. Upon hearing the name of the author of the book, her nervousness turned to fury.
‘God knows whether that man is even a doctor! Are you a friend of his? Did he send you here? Why on earth should I give a damn about your research?’ she shouted, veins throbbing at her temples. ‘I am not a guinea pig!’
Mariana’s reaction startled me. Unknowingly, I had opened old wounds, and I felt profound guilt for making them fresh again. My unexpected visit, as it turned out, was just another one of those harassing knocks at the door that she had endured throughout her life.
‘I recognize you!’ she snapped, jabbing a finger at my face. ‘You have been following me’.
I tried reassuring her that this was not the case, but Mariana struggled to take my word for it. Her privacy has been repeatedly invaded by complete strangers since childhood. Treating her as an object of their curiosity, her emotional wellbeing has been collateral damage. She now finds it difficult to trust anyone.
‘Please forget me,’ she then said, her voice cracking. ‘I just want to be left alone’.
LOOKING FOR ANSWERS
Mariana’s photograph was originally taken without her consent in the course of a medical examination, years before the internet existed. Soon after, it was published in a French medical journal, along with her full name and medical details. Her story then appeared in newspapers and magazines around the world. Decades later, when it was posted online, the photograph quickly went viral, taking on a life of its own. It has now been viewed millions of times, making it impossible for her to be left in peace.
Throughout her life, perfect strangers have invaded her privacy without regard for her emotional wellbeing
Unquestionably, the circulation of such sensitive material violates Mariana’s privacy, dignity and family-life interests as guaranteed by national laws and international human rights treaties. Less clear, though, is the practical question of how one goes about stopping the infringement of these rights. What can be done to stop the circulation of harmful (and non-consensual) content of this nature? Where does one even begin?
Haunted by Mariana’s lifetime of distress, and in search of answers, I landed at Osgoode Hall Law School in Toronto.
As journalist-in-residence there, I worked from 2017 to 2019 with a team of 20 law students and 18 law professors, alongside lawyers from several countries, on a project entitled ‘A Child’s Right to be Forgotten’. Our objective was to analyse Mariana’s case and find a potential solution to this extraordinary situation.
After a careful examination of multiple areas of law and a plethora of expert opinion – from legal academics, jurists, ethicists, medical professionals, trauma psychologists and scientists – we pursued several lines of approach.
COMPLICATED MATTERS
First, we considered copyright law to try to stop the circulation of the photograph. Given that it had been first published in France, UK legislation presented an opportunity to undertake corrective measures. Through the Berne Convention, the UK and France recognize each other’s copyright regimes. In France, the copyright was technically still valid – provided it could be established that the photograph was an intellectual creation under French law. If Mariana’s picture was being published online without the authorization of its owner, a request could be made to the rights holder, we reasoned, to revoke any use not bound by contract.
But we ran into difficulties locating the owner of the copyright as the image had no credit line. We tried contacting the medical journal in France, only to discover that it had since been acquired by another publisher, Elsevier Masson.
We reached out to Elsevier, but, surprisingly, they did not know whether or not they owned the copyright.
In a baffling email response, an employee from the company’s copyright unit wrote: ‘[W]e are unable to confirm that we are the legal copyright holders of the figure… and that we are entitled to deliver permissions to third parties. Therefore, although Elsevier Masson has no objection for you to use the aforementioned material subject to suitable acknowledgement to the source, it is important that you obtain, prior to use, written permission from the author(s) (or heirs) of the figure…’.
The only possibility of finding out who held copyright for the photograph was to ask the publisher if they had kept a copy of the contractual agreement with the photographer. But that turned out to be a dead end.
FURTHER INTO THE MAZE
Next on our list was image rights legislation. The island of Guernsey has legislation for the protection of a person’s image rights. This is a somewhat niche course, used mostly by celebrities, enabling them to register their image rights there and bring legal action against breaches. It sounded promising, but only Mariana, or someone acting on her behalf with her consent, could assert those rights. Seeing how Mariana avoided all contact with outsiders, and determined to prevent exacerbating her trauma by raking it all up again, we couldn’t pursue this route further.
We then looked into data protection and the right to be forgotten as a new line of inquiry. As it is in the EU, personal data is protected in Mariana’s country. Given that Mariana has not consented to the use of her personal information on the internet, a request can be made to those processing her information to remove it. This can be accomplished pursuant to her country’s Data Protection Act.
Better still, a request can be made directly to search engines (as opposed to individual websites) to remove search results containing infringing content. While this course of action normally would require Mariana’s direct intervention, there is a legal provision that makes it possible for a third party to lodge a formal complaint of infringement with the National Authority for the Protection of Data in that country. Mariana’s consent was not required for this action.
Encouraged by this new window of opportunity, we prepared to make our move. But soon other complexities arose. The complaint to the regulatory agency had to be filed in person, which we did – even though this required a long-distance trip. After securing the assistance of lawyers with relevant experience in Mariana’s country, we proceeded with a complaint against Google for infringing on her rights. But then, bureaucracy took on a Kafkaesque turn.
Our case was deemed inadmissible. Why? It turned out that Mariana’s consent was required after all for any action initiated to remove the very material that had been originally made public without her consent. But had Google obtained Mariana’s consent before making her personal data public online? Of course not. Could the regulatory agency make that inquiry? They failed to address this question. Two appeals later, our case was closed.
We then resorted to a non-legal approach. Bearing in mind that there is public interest in this matter, as well as a legal and moral obligation to put an end to decades of harm, we brought the case to the attention of five United Nations special rapporteurs seeking their intervention. Unfortunately, that avenue produced no fruitful outcome either.
A letter was then sent to Elsevier briefing them on the serious privacy impacts of the use of Mariana’s name and image in their publications. Would they consider removing them? Or at least blurring her face when using that image and anonymizing her details? It went unanswered.
No matter what we tried, we came up against hurdles.
THE BIGGER PICTURE
At the end of the day, this work is not just about Mariana. Her story is part of a much bigger picture. It is the story of countless vulnerable people being harmed by the online circulation of intrusive content, while internet intermediaries profit from such material.
According to trauma psychologists, Mariana will likely never be able to develop trust in others. The consequences of her childhood trauma and public exposure are profound, dramatic and long-lasting. And that is to say nothing of the strangers interested in her story, whose curiosity makes her relive her trauma again and again.
Countless vulnerable people are being harmed by the online circulation of intrusive content, while internet intermediaries profit
The literature on image-based abuse suggests that the re-posting of such images is, in and of itself, a form of abuse. The online availability of the images causes great damage to survivors.
Taking into account Mariana’s lack of agency, it is unreasonable to expect her, or someone in a similar situation, to stand up to tech giants and fight for her right to privacy. Given that online material can be shared globally, it is challenging to identify the jurisdiction in which infringements take place.
Even when there is agency, case law shows that filing a take-down request against search engines and social media platforms is onerous. While they boast about their global reach and presence, they can be quick to argue that they are based in the state of California and are not bound by laws outside that jurisdiction.
Mariana’s story is a cautionary tale of the consequences of failing to remove harmful content from search engines and the internet. Privacy matters. To protect it, regulation is essential. But legislation also needs strengthening to be sensitive to the trauma of those suffering from the unwanted online distribution of harmful personal data.
Remember that behind a photo there is a real person; it’s not just an image waiting for a click of your mouse.