CAREER COLUMN

The ADHD paper that triggered a backlash, and what it taught me

Anita Thapar’s research team faced a barrage of calls and e-mails, some of them hostile, following the publication of their paper on attention-deficit hyperactivity disorder. Here’s what she learnt.
Anita Thapar is professor of child and adolescent psychiatry at Cardiff University, UK.

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A young child playing a game with a woman at a table

An organizer and a visitor participate in a ‘brain game’ at a 2019 ADHD-awareness workshop put on by the MRC Centre for Neuropsychiatric Genetics and Genomics and the National Centre for Mental Health, both based at Cardiff University, UK.Credit: Catrin Hopkins/Cardiff University

In September 2010, I and two colleagues held a press conference on a paper we were about to have published in The Lancet. The paper was a genome-wide analysis that showed a higher burden of rare chromosomal deletions or duplications in people with attention-deficit hyperactivity disorder (ADHD) than in those unaffected by the condition (N. M. Williams et al. Lancet 376, 1401–1408; 2010).

I’m a clinical researcher and psychiatrist specializing in child and adolescent psychiatry, with an interest in ADHD. Our research, which was funded by Wellcome, a research-funding charity in London, and the UK Medical Research Council, looked at rare mutations linked to neurodevelopmental conditions, such as autism and schizophrenia.

The press conference took place in London at the Science Media Centre, an independent organization that promotes the accurate reporting of evidence-based science. For us, the findings weren’t hugely shocking, and I think we gave a balanced view at the briefing, which ran smoothly. The findings were widely reported, and the coverage was broadly accurate. After the press briefing, I stayed overnight in London because the following morning I had to do some breakfast television and radio interviews, including a slot on BBC Radio 4’s flagship Today programme.

Besieged

What happened next was extraordinary. Following the Today interview, which included an opposing view from a psychologist, our office in the division of psychological medicine and clinical neurosciences at Cardiff University, UK, was besieged. We received masses of phone calls and e-mails. Neither my secretary nor the rest of my group could do any work for more than a week. And the calls and e-mails went on for many weeks.

Most of the people who contacted us, and whom I met in the clinic, were thanking us for publishing the paper, but a few of the calls and e-mails were less kind. One, from a retired head teacher, said children with ADHD should be given the slipper. Some people accused us of being in cahoots with drug companies, and of being doctors who “just want to drug people”. But our study was not funded by the pharmaceutical industry. Because I work on ADHD, I am deeply aware of potential conflicts of interest and the ramifications of being accused of having one, so I am careful about not working with or taking money from such companies. People thought our view on genes was deterministic. However, our research group also works on the non-genetic environmental factors behind ADHD.

A young child wearing a mask

Another participant in the ADHD-awareness workshop.Credit: Catrin Hopkins/Cardiff University

I felt that some people were attacking us for working on the disorder. It really opened my eyes to the difficulties faced by people with ADHD and by their families, and why many parents don’t tell people if they have a child who has been diagnosed with it.

Naive

Being in the limelight was difficult. Usually, my team is just a bunch of people quietly getting on with research, but we were suddenly very visible to our colleagues. My home life was affected too. I tend not to go on about work, but suddenly all our neighbours knew about my research, and I got asked about it at social events. Although the press coverage was largely accurate, I still worried that we had done a disservice to people with ADHD because of the reaction to the paper.

As a clinical psychiatrist, I’m used to talking to people. I’d had media training before the paper came out, and have done more since then. But I look back now and feel we were naive about the strength of some people’s views on ADHD. My husband and children love Today, and they were excited about me appearing on the programme. The night before that interview, I was accused of hyping up the findings in the press release. It felt threatening. However, I am generally able to deal with challenging situations, so I didn’t find it hard to stay calm during the interview.

The paper’s findings have been replicated, and ADHD looks a lot like autism in many respects — yet public opinion about autism seems different.

Caution

What did this experience teach me? First, I would have been much more careful with the wording in the press release, given that it was on ADHD. I would have edited it more heavily.

Were we right to hold the press briefing? I feel that we were. But I suppose you need to recognize that a topic such as ADHD, especially when the findings deal with biology, is likely to generate lots of emotion in the public. In the future, I would clear time in my diary to handle the resulting feedback and fallout.

Our team was accurately quoted at the time as saying that our paper provided the “first direct genetic evidence of ADHD”. In hindsight, the word ‘direct’ might not have been the best choice. It was intended to convey that our evidence was based on laboratory results rather than on previous studies of twins and families that had already shown ADHD to be highly heritable.

When our Lancet paper was published, social media was less developed. I wasn’t on Twitter at that time. I am now. I mostly follow individual researchers, clinicians and ADHD groups. I’m very cautious about how we present ADHD research findings, and how we present its links to biology. I am much less worried about reporting on other types of mental-health problem and on our results from research on social factors.

Despite my experience as a researcher and clinician, I feel it is important to engage with the media. I’ve just had a clinical trainee who finished her PhD programme and was asked to do a podcast. She asked for my advice, and I told her to do it. We’re doing publicly funded research, and we have to communicate our science. Sometimes we will get criticized, but that’s nothing compared with what people with these conditions are going through.

doi: 10.1038/d41586-020-01433-2

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