Cancer stories and contextual privacy

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Privacy on the social Web is tricky. A year after Randi Zuckerberg’s reminder that privacy is nuanced and contextual, Emma Keller, writing for the Guardian, crossed a few lines in her article about Lisa Adams’ experiences with breast cancer which was titled “Forget funeral selfies. What are the ethics of tweeting a terminal illness?” and was withdrawn by the Guardian after a controversy exploded on Twitter. The article is still available in the Internet Archive’s Wayback Machine if you would like to read it.

In her post titled “Social Media Is a Conversation, Not a Press Release” on Medium, Zeynep Tufekci explored a few themes that emerged from the controversy, including the ethical implications of Keller’s approach and the value of a public conversation about cancer. Although the subject resonates with me, generally, (my father passed away on 2003 after a short struggle with pancreatic cancer), this aspect stood out for me:

Emma Keller admitted that she had conversed with the subject via email and DM on Twitter without telling her that she was doing a story about her, and quoted Lisa Adams’ private direct messages without as much of a notification, let alone a permission.

In her article, Keller referenced a direct message conversation she had with Adams:

In some ways she has invited us all in. She could argue that she is presenting a specific picture – the one she wants us to remember. “I do feel there will be lasting memories about me. That matters,” she wrote to me in a direct message on Twitter.

If you are unfamiliar with Twitter direct messages, they are inherently private and only people who follow you may send you direct messages. Aside from not informing Adams that she was writing a story about her, Keller apparently did not obtain Adams’ permission to repeat the direct message conversation and that violated Adams’ privacy, regardless of how public she is about other aspects of her experiences. She related another incident which highlights the nuances:

She describes a fantastic set up at Sloan-Kettering, where she can order what she wants to eat at any time of day or night and get as much pain medication as she needs from a dedicated and compassionate “team”, but there is no mention of the cost. She was enraged a few days ago when a couple of people turned up to visit her unannounced. She’s living out loud online, but she wants her privacy in real life.

Privacy isn’t an all or nothing thing. As I pointed out in my post about Randi Zuckerberg’s contextual privacy experience last year –

The seminal case on the right to privacy in South Africa is the Constitutional Court case of Bernstein and Others v Bester NO and Others. The Constitutional Court said that the right to privacy is informed largely by a legitimate expectation of privacy which, in turn, means that a person must establish that:

“he or she has a subjective expectation of privacy and that the society has recognized that expectation as objectively reasonable.”

The subjective component means that a person can’t have an expectation of privacy where that person has consented to have his or her privacy invaded. The objective component introduces a requirement for reasonableness when assessing an apparent privacy violation. There is a notion of a “continuum of privacy interests” which is a helpful application of this idea of a legitimate expectation of privacy. The Court in the Bernstein case said the following:

“The truism that no right is to be considered absolute, implies that from the outset of interpretation each right is always already limited by every other right accruing to another citizen. In the context of privacy this would mean that it is only the inner sanctum of a person, such as his/her family life, sexual preference and home environment, which is shielded from erosion by conflicting rights of the community. This implies that community rights and the rights of fellow members place a corresponding obligation on a citizen, thereby shaping the abstract notion of individualism towards identifying a concrete member of civil society. Privacy is acknowledged in the truly personal realm, but as a person moves into communal relations and activities such as business and social interaction, the scope of personal space shrinks accordingly.”

This is an explanation for why people in the public eye have a different legitimate expectation of privacy than people who are deeply private and secretive. A person’s legitimate expectation of privacy is determined by their level of publicity and the consents they have given to invasions of their privacy.


p>Keller made a common mistake of assuming that because Adams is public about some aspects of her cancer experiences that she has waived her expectation that the rest of her life enjoy some measure of privacy. This is not the case. Privacy is a complex and nuanced set of expectations and rights and is complicated by the very public fora we use to share aspects of our lives. Nevertheless, it is a model which confounds many people, including journalists who should take greater care with information they are privy to.

Published by Paul Jacobson

Enthusiast, writer, Happiness Engineer at @automattic. I take photos too. Passionate about my wife, Gina and #proudDad.

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