Why an article on Lisa Bonchek Adams was removed from the Guardian site

http://www.theguardian.com/commentisfree/2014/jan/16/why-article-lisa-bonchek-adams-removed

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Lisa Bonchek Adams is a woman who has stage IV breast cancer and is currently receiving palliative treatment in the Memorial Sloan-Kettering Cancer Center in New York.

She has documented the progress of her cancer but also many other aspects of her life in tens of thousands of tweets, sometimes 200 in a day, that have inspired men and women alike.

The tweets reveal a painful honesty that is remarkable; she never loses her dignity or fails to exude a sense of positivity.

Emma Keller, a freelance journalist based in New York, who has herself had treatment for breast cancer, got to know of Adams online when Keller hosted – as part of her Guardian US series The Living Hour – a live chat on DNA and cancer tumours in early November 2013. Keller continued to keep track of Adams's health and noticed a few weeks ago that Adams was tweeting a lot more, and from a situation she described as agonising.

On 8 January Keller wrote a blogpost on the Guardian US website that turned on the use of social media to discuss terminal illness publicly and focused on Adams and her tweets.

Keller wrote: "As her condition declined, her tweets amped up both in frequency and intensity. I couldn't stop reading – I even set up a dedicated @adamslisa column in Tweetdeck – but I felt embarrassed at my voyeurism. Should there be boundaries in this kind of experience? Is there such a thing as TMI? Are her tweets a grim equivalent of deathbed selfies? Why am I so obsessed?"

Adams and her family were shocked by the blogpost, which she has said completely misrepresented the nature of her illness and her reasons for tweeting, was riddled with inaccuracies, and quoted from a private direct message to Keller through Twitter published without permission.

It was a shock compounded by the publication on 13 January in the New York Times of a column by Keller's husband, Bill Keller, a former NYT executive editor, which also focused on Adams's use of social media.

A social media campaign in support of Adams began after Keller's blog and then escalated after the publication of the New York Times article. The criticism of the NYT piece was addressed by the paper's public editor in a blogpost published on 13 January.

An email from Adams to a senior Guardian US editor on 11 January setting out some of her most serious complaints about the piece posted on our site was passed to me on Monday, 13 January. The article was taken down that day because I felt some space was required to allow reflection. I mislabelled the reason for the takedown in the footnote online as being that the article was in contravention of the Guardian's code of conduct. Within an hour I changed the footnote when I realised that the issue needed more consideration and that the writer had not had a proper opportunity to respond to an email. That error is entirely my responsibility.

One of the many difficulties in trying to resolve the complaint is that the complainant is undergoing painful treatment. While she has continued to tweet from hospital, she has made clear in the two emails the Guardian has received from her that she does not feel she should have to take time from her treatment to engage with the process of correcting what she believes is wrong in the piece. I entirely understand and respect her position. In the emails to the Guardian she said that the column was "callous" in its treatment of her.

I agree that there are many problems with the article and the way it is presented, both in style and tone. The headline and subheading – not written by Keller – are too flippant. And the references to Adams as "dying" and being on her "deathbed" are inaccurate representations of her illness and the way she portrays that illness in her public tweets. She has not tweeted "100,000 times about her health" – an error introduced in the editing process – nor has she been in a "seven year decline". She said that between June 2007 and October 2012 she was in remission. It was only at the end of that period that she was diagnosed with metastatic cancer, and she said in one of her emails to the Guardian that since then she has tweeted prolifically "for the purpose [of] education and also community to bring doctors, patients, hospitals, scientists, advocates and everyone touched by cancer closer on the [one] goal we should have: support and compassion for the metastatic cancer patient, not a blindsiding critique of how they spend their time".

While there was no obligation for Keller to tell Adams that she intended to write the article drawing on the public tweets, I strongly feel Keller should have done so in such a sensitive situation. In an update to the blogpost on 10 January Keller posted an apology about that failure and about using part of a private Twitter message.

Keller says: "I did go back and read all her blogposts so I knew her history. But her story gained a sense of urgency shortly after we had her on The Living Hour, with her explicit descriptions of her incapacitating pain, and her announcement that she had been taken off her clinical trial as it wasn't working.

"I did offer her a place to stay during a clinical trial. At the time I had no intention of writing about her and it was the gesture of one cancer patient to another. I have already said I regret not giving her notice about the use of her DM [Twitter direct message] where she told me that it mattered to her that there would be lasting memories about her. I continue to regret not giving her notice about the piece. In the circumstances it would have been the compassionate thing to do and Lisa deserved that."

I don't think it is wrong to frame a question about how those with incurable illnesses use social media, but the Guardian was wrong in the way it went about it. I have written to Adams to suggest we put up a fresh piece dealing with all her issues when she is able to engage with us, and to offer to publish a response entirely from her point of view. However, it is only right that this should be in her own time and that she should be allowed to get on with her treatment without any pressures. Therefore I do not anticipate that I will have fully resolved all issues for some time, and I think that we should not restore Keller's original article to our website until I can do so.

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