‘Crucial knowledge on disasters is lacking’

According to disaster researchers, an exaggerated fear of overburdening the Utøya victims and their loved ones impeded important research in the aftermath of 22 July 2011.

Two people stand on the shore by all the flowers laid down. They look over at Utøya.
77 people were killed in the terrorist attacks on Utøya and in Oslo on 22 July 2011. Photo: Mads Nissen/NTB
Cover of the magazine
2021-2 The Magazine Research Ethics is an independent magazine on research ethics and research integrity published by the National Research Ethics Committees (FEK) in Norway. ISSN digital edition: 2387-3094.

‘Our first impulse is to protect the vulnerable, such as the Utøya survivors. In a crisis situation, society must ensure that those affected receive the necessary protection, support and help. But we also have to ask ourselves if that rules out the possibility of inviting them to take part in research’, says Grete Dyb. 
Dyb is head of research at the Norwegian Centre for Violence and Traumatic Stress Studies (NKVTS), and a professor in child and adolescent psychiatry at the University of Oslo. NKVTS is responsible for the Utøya study, which examines how the terrorist attacks of 22 July have impacted on the lives and health of the survivors and their parents. 
Dyb found that the health authorities had a strong focus on what those affected could endure and how much it was fair to expose them to in the aftermath of the terrorist attacks. This was also one of the main topics in the national coordination group for the research on 22 July. 
‘Their mantra was: those affected must not be overburdened’, recalls Dyb.  

Big discussions 

But what about the other side of the scales, where the benefit of research weighs heavier? Dyb believes that the assessment of what society would actually learn from the events of 22 July 2011 has been far from comprehensive. 
‘At any rate, that assessment was taken less seriously than the assessment of how burdensome an invitation to take part in research might be.’ 
Dyb regarded the attitude to research immediately after the terrorist attacks as ‘very restrictive’. This was also the view of researchers at the Centre for Crisis Psychology at the University of Bergen when they initiated a study of the psychosocial follow-up of those bereaved following the Utøya attacks. 
‘We had a big discussion with the ethics committee about active consent, recruitment and contact with the bereaved’, says Pål Kristensen, an associate professor at the centre. Kristensen has also been project manager for the follow-up study of the bereaved. 
One of the main concerns was that people in vulnerable situations could be retraumatised by the research. In order to avoid this, researchers were not permitted to contact the bereaved too soon, or make direct contact via phone calls or text messages etc. 
‘The consequence of this restrictive attitude is that society may have lost important knowledge’, states Dyb. 

Research can help future victims 

According to Dyb and Kristensen, there is a need for knowledge about the long-term effects of traumatic events such as terrorist attacks, but particularly about how people feel in the first weeks and months following such events. They believe that this phase needs to be investigated in closer detail in order to be able to provide, for example, better crisis support and assistance. 
Dyb notes that many studies do not start until a year after the events in question and conclude after 2–3 years. The NKVTS researchers started their study four months after the terrorist attacks, which is sooner than many other projects. For the researchers at the Centre for Crisis Psychology in Bergen, however, it took a full 18 months. The research group has subsequently pointed to a challenging application process in the Regional Committees for Medical and Health Research Ethics (REK) as one of the reasons. 
‘Ethical assessments are of course absolutely essential, and how soon a study should be initiatied is a relevant question. However, in order to establish what can reduce the burden of grief as much as possible, or conversely a course of chronic mental health problems, we need to collect information at the earliest opportunity’, says Kristensen.  
‘Do you agree that there are knowledge gaps in the 22 July research?’ 
‘Yes, I would say so. Peer reviewers of our articles have pointed out that there is no data from the first year. There are generally few studies on the impact of terrorism on the bereaved, so it is important to discuss how we can initiate studies sooner.’  

Humility, respect and empathy 

Legislation, including the Health Research Act and the Personal Data Act, sets out recommendations for what researchers can do. 
‘The Health Research Act does not take into account the special challenges you face when a crisis or disaster occurs and you need to conduct research in real time’, says Dyb. 
There are also several examples of the law being interpreted too strictly, according to Dyb and Kristensen. They encourage the bodies responsible for assessing and pre-approving the research not to be solely guided by the idea of protection. More expertise may be a step in the right direction. 
‘Research ethics committees such as REK and NEM need to learn more about what is justifiable, and how good preparedness support in connection with these studies can help ensure that they are carried out responsibly and with little risk for vulnerable people’, claims Dyb. 
She points out that NKVTS had extensive preparedness support in place for the research interviews conducted in the Utøya study. And Kristensen notes that looking after the bereaved has always been a key part of the research process at the Centre for Crisis Psychology. Humility, respect, empathy and closeness are important keywords for the researchers. 
‘It’s possible to create a framework for meeting ethical needs, also in projects like these. This involves having experienced people who can assess the need for help along the way and having a good preparedness plan’, says Kristensen. 
He says that several studies they have conducted emphasise that participants often take part in research because it gives meaning to the meaningless. 
‘They are often motivated by the fact that their experiences can benefit others.’ 

Still challenging 

After the landslide in Gjerdrum in December 2020, NKVTS was given responsibility for advising and assisting personnel who were to provide health care and psychosocial help for the victims. This is another case where it was difficult to initiate vital research’, says Dyb. 
‘Research is forced to take a back seat because of the difficulty of prompt set-up due to the requirements for ethical approval and a lack of resources.’ 
The Workers’ Youth League (AUF) is now calling for a new 22 July commission to examine the thinking behind the mass murders. 
‘In this kind of work, we also need to discuss how we can find better solutions for research in all phases after disasters’, Dyb states. 


‘A special situation’  

Jacob Hølen, head of the secretariat in REK South East, notes that the 22 July survivors and bereaved were among the most vulnerable populations researchers can be faced with.  

He thinks it is difficult to say whether REK was overprotective and thereby impeded important research ten years ago. 
‘The committee certainly highlighted the value of the projects, which was reflected by the fact that they were approved. The Health Research Act is also very clear that consideration to the welfare of the participants must come before the benefit to society. When faced with projects with such vulnerable participants as in this instance, a thorough assessment is needed. The committee did not take it lightly then and will not do so in the future if it receives similar projects’, says Hølen. 
‘Does REK need more expertise in vulnerability and preparedness, as Dyb and Kristensen claim?’ 
‘REK are not experts in everything, and there is no doubt learning potential in this area.’  

Shared responsibility  

According to Hølen, REK is quite familiar with the research showing that most people who have experienced crises find it safe and useful to participate in studies about what they have been through. 
‘But what about the few who could have the opposite reaction? REK must also take these into account’, he points out. 
The head of the secretariat is in complete agreement that it would be beneficial to initiate research as soon as possible after such incidents – but the researchers themselves and REK must share this responsibility. 
‘Researchers in such fields should try to plan any future projects so that they are ready to submit completed applications to REK as soon as a crisis occurs. In cases where researchers want to make a quick start, we often see applications with insufficient or unclear information’, says Hølen. 
‘Researchers will also often seek changes and adaptations along the way, like in the aforementioned study at the Centre for Crisis Psychology, which had to wait two months for the first approval. 
Hølen emphasises that REK will facilitate rapid case processing in extraordinary situations, as they did when the research on COVID-19 started. 


Unsure about starting research soon after events  

Research is important and useful, but it can also be too soon, believes Lisbeth Røyneland, head of the National Support Group after 22 July. 
The support group aims to promote the interests of those affected by the bombing of the Government Quarter and the shootings on Utøya. The group has pushed to get research started, and made sure that the researchers have not gone too far. 
‘The researchers’ interaction with us has changed over time – for the better’, says Røyneland. 
For example, research participants now usually receive information about the key results before they are published in scientific journals or discussed in the media. 
‘It is important to feel that you are valued and taken seriously’, emphasises Røyneland. 
She believes that the research on 22 July has provided important insight, both into the extensive long-term effects of terrorism and the importance of taking the psychological repercussions seriously at an early stage. The head of the support group confirms that most of those affected generally see the benefit of research. 
‘By participating, they feel that they are helping future victims.’ 
‘How important do you think it is to get started sooner, for example in the first few months?’ 
‘I understand the intention behind it and that it can be important, but I’m not sure how many people the researchers could have recruited. Many people’s world was completely destroyed, at least for the first six months. I don’t know if I myself would’ve wanted to be bothered with research at that point’, says Røyneland. 
Translated from Norwegian by Carole Hognestad, Akasie språktjenester AS.