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Technology in Society 45 (2016) 8e18

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Technology in Society

journal homepage: www.elsevier .com/locate/ techsoc

Exploring responsible innovation: Dutch public perceptions of thefuture of medical neuroimaging technology

Marlous E. Arentshorst*, Tjard de Cock Buning, Jacqueline E.W. BroerseAthena Institute for Research on Innovation and Communication in Health and Life Sciences, VU University Amsterdam, De Boelelaan 1085, 1081 HVAmsterdam, the Netherlands

a r t i c l e i n f o

Article history:Received 22 April 2015Received in revised form21 January 2016Accepted 22 January 2016Available online xxx

Keywords:Public perceptionsNeuroimagingFramesLines of argumentsFocus groupsResponsible research and innovation

* Corresponding author.E-mail address: m.e.arentshorst@outlook.com (M.

http://dx.doi.org/10.1016/j.techsoc.2016.01.0030160-791X/© 2016 Elsevier Ltd. All rights reserved.

a b s t r a c t

Insight into public perceptions provides opportunities to take public desires and concerns into account inan early phase of innovation development in order to maximise the potential benefits for users of thefuture. Public perceptions of neuroimaging in health care are presented in this article, based on researchundertaken in the Netherlands. In six focus groups, 46 citizens articulated benefits, disadvantages andspecific concerns regarding future medical neuroimaging applications. Six technological frames ofneuroimaging and three frames of the socio-technical system surrounding neuroimaging were found tounderlie the arguments used to articulate the degree of desirability of future applications. Depending onthe context, individuals use different frames and related lines of arguments. New and improved optionsfor the prevention, diagnosis and treatment of brain disorders are considered conditionally desirable byalmost all citizens consulted. The desirability of neuroimaging applications becomes controversial whenspecific applications embody conflicting values and desires. Depending on the weight given to thesedifferent values and desires, the application is perceived as desirable or undesirable. It appears thatconcerns regarding the endorsed values of certainty and naturalness are preferred to desired states ascontrol over life and risk avoidance. As a consequence, enhancement options and options to determine apredisposition and to diagnose mental disorders might be considered controversial. The identifieddifferent perspectives and concerns are a suitable starting point for processes aiming at the identificationof more responsible future directions and related applications of medical neuroimaging.

© 2016 Elsevier Ltd. All rights reserved.

1. Introduction

Innovations in neuroimaging technologies, such as functionalmagnetic resonance imaging (fMRI), magneto-encephalography(MEG) and positron emission tomography (PET), make it possibleto visualise and study non-invasively the function, connectivity andbiochemistry of the brain. Neuroimaging developers expect thatfuture advances in these technologies will make it possible toobtain more insights into the brain and its disorders, resulting innew and improved preventive, diagnosis and treatment options[e.g. [1e3]]. They demonstrate a focus on preventive options forwhich therapeutic options are available. But is this focus alsodesirable from a public perspective?

To establish an appropriate societal embedding of innovations, itis suggested that societal actors and innovators should engage in an

E. Arentshorst).

interactive process by which they ‘become mutually responsive toeach other with a view to the (ethical) acceptability, sustainabilityand societal desirability of the innovation process and its market-able products’ [4 p.47]. Hereto, participatory methods are increas-ingly applied to ensure that more aspects and more actors,including citizens, are actively engaged in the innovation process[e.g. [5e7]]. Applying these approaches, especially in early phasesof technological development, is claimed to improve the translationto applications in which positive impacts are maximised andnegative impacts are minimised, and the societal embedding isfacilitated [8,4,9].

The research described here is part of a project that aims todirect medical neuroimaging developments in the Netherlands inan early phase towards more shared desirable applications and toanticipate negative impacts. In this article, we explore how neu-roimaging applications in health care are perceived by the Dutchpublic in a heterogeneous cross-section. In our research, citizensare a potential group of future users. They might use or are affectedby neuroimaging in the future, but are no part of the health system

M.E. Arentshorst et al. / Technology in Society 45 (2016) 8e18 9

yet. In contrast to other future users (e.g. health professionals,policy-makers), the perceptions of citizens are not resulting from aprofessional perspective, but rather from a personal perspective.Their knowledge can be considered as ‘contributory expertise’ [10],and their desires and concerns should also be taken into account inan early phase of innovation research and development in order tomaximise the potential benefits of innovations for users of thefuture. Insight into public perceptions that already exist and whichare likely to appear in the public arena in the near future providesinsights into aspirations and potential obstacles that might offeropportunities or cause problems in the embedding of future ap-plications at an early stage. These understandings are in ouropinion the starting points for joint reflection and mutual learningof relevant actors, e.g. decision-makers, health-care professionalsand neuroimaging developers, in order to direct medical neuro-imaging developments towards more responsible applications, i.e.applications that are considered desirable by all relevant actors.

1.1. Public perceptions

In this early phase of neuroimaging development, concrete ap-plications on which to reflect are not available and actors might benot fully aware of or familiar with neuroimaging. In later phasesthis situation is reversed, applications and implications areapparent but options to steer the innovation are limited (cf. Col-lingridge Dilemma of control). As Pickersgill and others [11] pointout, the brain is often regarded as an object of mundane signifi-cance and taken for granted until it becomes present as a conse-quence of its dysfunction. Participants in their research, includingpotential future users, accounted their emergent interest of neu-rosciences as a result of some neurological event (that is, personalexperience or familiarity with disorders of the brain). This couldimply that citizens not involved with neuroimaging from a pro-fessional or personal capacity are not fully aware of or familiar withneuroimaging. However, people often use heuristics in the firststage of perspective formation [12]. Perspectives are shaped by anindividual's underlying value orientations, worldviews, knowledge,experiences, and interests [13]. Perspectives (also known as framesor schemas) are ‘thought organisers’ [14], used to perceive, judgeand respond. They represent a way of making sense of complexreality and guide actions [15]. Heuristics are cognitive shortcutsused to make rapid inferences, based on previously acquired in-formation and experiences. They reduce complex problems orquestions to simpler problems and questions that can be answered,rather than dealing with the more complex issues [16,17]. Hence,although people might not be fully informed, heuristics make itpossible to shape perceptions about new and emerging science andtechnologies.

On the other hand, the ability of neuroimaging to visualiseprocesses in the brain and to generate compelling images hereof inmass media has raised public curiosity and expectations regardingneuroimaging uses, at least in the UK [18]. In a survey among UKcitizens of Wardlaw and others [19] only 17% of the people indi-cated to have “no awareness” of neuroimaging uses. In general, UKcitizens indicate to have faith in neuroimaging use for medicalpurposes [19]. An analysis of the Dutch media coverage of neuro-imaging research shows that the Dutch media is rather optimisticconcerning neuroimaging research, especially regarding potentialmedical applications [20]. This however does not automaticallyimply that medical neuroimaging applications are consideredbeneficial regardless their purpose. According to Chilvers & Mac-naghten [21, p.16] “public attitudes […] also depend on whichtechnology sector is being discussed as well as on a set of widercontextual and attitudinal factors.” Moreover as Pickersgill andothers [11] show, neurosciences can be experienced as a threat for

those people who perceive neuroscientific concepts to competewith pre-existing ideas about selfhood. In this study, we aim to gaininsights into the degree of desirability of potential future medicalneuroimaging applications according to Dutch citizens, by obtain-ing an in-depth understanding of the arguments underlying theirperceptions.

2. Methodology

To explore medical neuroimaging from a public perspective weused focus groups with citizens [22]. The aim of the focus groupswas to explore desirable and undesirable neuroimaging applica-tions, and to obtain an in-depth understanding of the argumentsunderlying the perceptions, involving participants who are notinvolved in neuroimaging from a professional or personal capacity.

2.1. Focus group participants

In this study, 46 citizens participated in 6 focus groups,geographically divided over The Netherlands. Two focus groupswere held in Amsterdam, two in Eindhoven, one in Den Bosch andone in Amersfoort to prevent a regional bias in the results. Todevelop a rich discussion, a wide variety of personal backgroundwas sought among participants, see Table 1 which provides anoverview of the socio-demographic features of the participants.

To avoid self-selection bias of the participants, the participantswere invited from a diversity of public fora, including informalcontacts and sport clubs (two focus groups) and a recruitmentagency (four focus groups). To avoid anticipation on the topic, noinformation about the topic of discussion was provided to partici-pants in advance. The participants recruited by the recruitmentagency received a standard financial incentive of V35.00. Thoseinvited via informal contacts and sport clubs received a small dinerprior to the start of the focus group, a box of chocolates at the end,and reimbursement of travel expenses.

The focus groups were led by a facilitator who guided the dis-cussions and a monitor who observed the group process and tooknotes.With permission of the participants and based on anonymity,all focus groups were audio recorded after informed consent wasobtained. The focus groups lasted for approximately two hours, allwith a short break halfway through.

2.2. Pilot testing

The methodology was fine-tuned using two pilot focus groups.This fine-tuning involved assessing the use of focus groups to in-ventory public perspectives of an emerging, rather unfamiliartechnology and testing the design. The pilot groups showed thatparticipants were able to articulate desires and concerns regardingfuture neuroimaging applications. Based on this testing, the focusgroup design was optimised: exercises were amended to minimiseambiguity and increase consistency between the data of the focusgroups. The results of the two pilot focus groups are not included inthe results described here.

2.3. Structure of the focus groups

The focus groups consisted of the following five steps:Step 1 Getting acquainted with neuroimaging. In order to assess

the starting level of knowledge, the participants were asked if theyhad ever heard of a technology named ‘neuroimaging’ and whattheir first thoughts were on these technologies. Subsequently, allfocus groups started with a short presentation describing neuro-imaging, providing participants with the same information andthereby the same level of knowledge, see Box 1. In presenting the

Table 1Socio-demographic features of the citizens consulted.

Focusgroup 1Amsterdam

Focusgroup 2Amsterdam

Focusgroup 3Den Bosch

Focusgroup 4Amersfoort

Focusgroup 5Eindhoven

Focusgroup 6Eindhoven

Participant 1 F 16e30 M 45e60 F 60e75 M 30e45 M 16e30 F 16e30Participant 2 F 30e45 F 45e60 F 45-60 F 16e30 M 30e45 M 60e75Participant 3 F 45e60 F 45e60 M 60-75 M 60e75 F 30e45 F 45e60Participant 4 F 45e60 F 45e60 M 30-45 F 45e60 F 45e60 F 60e75Participant 5 F 30e45 F 30e45 M 45e60 F 45e60 F 30e45 F 30e45Participant 6 F 30e45 M 40e50 M 16e30 M 45e60 F 60e75 M 16e30Participant 7 F 30e45 F 45e60 F 45-60 M 30e45 M 45e60 M 45e60Participant 8 F 45e60 M 45e60 M 30e45Participant 9 M 45e60

Symbol Explanation Total

F female 27M male 1916e30 aged between 16 and 30 years 630e45 aged between 30 and 45 years 1345e60 aged between 45 and 60 years 2160e75 aged between 60 and 75 years 6

Low educational level (e.g. lower general secondary education, lower vocational education) 5Middle educational level (e.g. higher general secondary education, pre-university and vocational education) 17High educational level (e.g. higher vocational education or academic degree) 24

M.E. Arentshorst et al. / Technology in Society 45 (2016) 8e1810

information we aimed not to value the provided example possi-bilities as either positive (good) or negative (bad).

Step 2 Inventory of intuitive desirable and undesirable ideas. Afterthe presentation, the participants were asked to write down onpost-it notes intuitively two desirable and two undesirable orworrisome ideas they had of medical neuroimaging applications.

Step 3 Clarification of ideas. Next, the participants were asked toexplain their ideas and why the goal or application written downwas desirable or undesirable. During this step, the post-it noteswere clustered by the facilitator on instructions of the participants

Box 1

Description of neuroimaging presented to the participants.

Neuroimaging: technologies that visualise the brain and

brain processes without damaging interventions.

Example: fMRI which visualises (changes in) brain activity.

For example in rest, or when listening to music. To ‘visu-

alise’ if medication works.

Health care: contains everything from first complaints to

treatment and care.

on similarities concerning desirability or undesirability of the ideas.In this way, the articulated ideas were clustered based on a com-mon goal or impact which was seen as important by theparticipants.

Step 4 Reflection on future applications: 4 cases. In this step, theaim was to reflect on four neuroimaging applications in order toinventory the diversity of perspectives. The cases were derivedfrom a state-of-the-art literature study of medical neuroimagingand interviews with neuroimaging developers. We presentedlimited information about the applications in order to allow theparticipants to formulate their own views. Table 2 shows the ap-plications and the descriptions used during the focus groups. In linewith qualitative methodologies, we adapted the design of the focusgroup as we went along. In the first two focus groups, Cases 3a and

3bwere provided as separate cases. When the focus groups showedno large differences in responses to the two cases, with participantsarguing spontaneously that targeted treatment was highly desir-able, Cases 3a and b were combined as: “Neuroimaging use tomonitor the effectiveness of medication and/or the progression of abrain disorder” in the next four focus groups. Furthermore, a newCase 4 was added: “personalised treatment”.

The participants received a red and a green card and were askedto react intuitively to each case by putting a green card in front ofthemwhen they thought the example was desirable and a red cardwhen they thought the example was undesirable or worrisome.Thereafter, the facilitator asked each participant why theyperceived the case as desirable or undesirable, and stimulateddiscussion about which prerequisites were important. By usingpost-its and flip-charts, the discussion was made visual and par-ticipants could see what was already mentioned and what wasmissing from their perspective. The aim of this exercise was not toreach consensus amongst the participants but to inventory allperceptions present in the group. To establish this, an articulatedperception was written down and other perceptions that were ar-ticulated in responsewerewritten down in the sameway. When allperceptions were inventoried, the participants were asked if theyhad obtained a different perspective as a result of the discussionabout the case. Subsequently, they were asked, when applicable, toswitch the colour of the card in front of them. When participantsswitched their card, the motivation(s) for the switch was discussed.Then, the next case was presented and step 4 was repeated.

Step 5 Closure. At the end of the focus group, the participantswere asked whether they had obtained a (different) perspective onneuroimaging during the discussions and how they had experi-enced the focus group.

2.4. Data analysis

All focus group discussions were transcribed literally. Theidentities of the participants were anonymised by replacing theirnames with unique research codes. Data analysis was executedusing qualitative data analysis software (ATLAS.ti). Transcripts werecoded using an inductive approach. We specifically examined howthe participants made sense of neuroimaging and their perceived

Table 2Cases used in the focus groups.

Case 1: Faster and earlier DiagnosisFaster and earlier diagnosis with the help of neuroimaging technologies that ‘show’ the disorder. With this, it is imaginable that current tests, such as questionnaires and

behavioural tests might become superfluous.Case 2: Determine a predispositionDetermine an individual's chance of developing certain brain disordersCase 3a: Monitor medication‘Following’ the effect of medication. For example, visualise if the medicine arrives at the intended location in the brain.Case 3b: Monitor development and progressionMonitor whether a predisposition is developing and/or the progression of a brain disorder.Case 4: Personalised treatmentDevelopment of tailor-made, therapeutic options for individuals

M.E. Arentshorst et al. / Technology in Society 45 (2016) 8e18 11

potential advantages, disadvantages and concerns. We noticed thatdifferent interpretations of neuroimaging were employed to arguethe degree of desirability. From Orlikowski and Gash [23] we takethe concept of ‘technological frames’ to describe these differentinterpretations of neuroimaging. We continued by identifyingtechnological frames as they became apparent in the data andnoticed that besides technological frames, different frames of thesocio-technical system surrounding neuroimaging (including itsactors, rules and policies) determined the degree of desirability. Welabelled this ‘socio-technical system frames’ to describe the as-sumptions, expectations and knowledge of the participants to-wards this system. This does not imply that the frames are notrelated to each other. The main difference is that technologicalframes comprise how neuroimaging technologies are perceived tofunction and result in consequences for one's life, and socio-technical frames comprise how actors of the socio-technical sys-tem (e.g. health professionals) are perceived to develop and applyneuroimaging and resulting consequences for one's life. Foranalytical purposes this distinction is useful to gain an in-depthunderstanding of the arguments underlying the participant'sperceptions.

The characteristics and interpretations of the frames wereconstantly discussed between the authors, re-grouped, re-namedand verified with the transcripts to assure quality representative-ness of arguments brought forward by the participants and socialrepresentativeness, meaning that each frame recurred in multiplefocus groups and participants. During this phase of the analysis itbecame apparent that depending on the context of applicationdifferent frames were used in a certain pattern to argue the desir-ability of neuroimaging applications. This is in line with Orlikowskiand Gash [23, p.178], who point out that technological frames donot only include “the nature and role of the technology itself, butalso the specific conditions, applications, and consequences of thattechnology in particular contexts”. In other words, different tech-nological frames exist and the context of application combinedwith the relevant socio-technical frame determines which tech-nological frames are used to argue the desirability. Further analysisof which patterns occurred in which focus group showed thatpatterns were the same for each case discussed. To assure qualityand social representativeness, patterns of arguments wereconstantly discussed between the authors and verified with thetranscripts.

3. Frames of neuroimaging and its socio-technical system

One of the 46 participants indicated to be aware of neuro-imaging. Most participants indicated to have no idea what neuro-imaging was, and some participants indicated (guessed) that itshould have something to do with neurology and visualisation.

In articulating and discussing desirable and undesirable appli-cations and situations almost all participants employed different

frames. These frames are mental images of how neuroimaging isperceived to function (technological frame) and how neuroimagingis developed and used in practice (socio-technical frame). Partici-pants interpreted neuroimaging as 1) an objective tool, 2) anadvancement tool, 3) a reductionistic tool, 4) a tool that intervenesin naturalness, 5) an uncertain tool and/or 6) as a slippery slope topotential negative future situations. See Table 3 for a description ofthe frames.

The socio-technical system surrounding neuroimaging isframed as a system that can be 1) trusted, 2) accepted and/or 3)should be distrusted and feared. See Table 4 for a description of theframes.

3.1. Different frames to discuss the degree of desirability dependingon the context

In the discussions, the participants did not restrict themselves toone frame. Depending on the perceived desirability of the appli-cation under discussion, they employed different frames in theirarguments (44 out of 46 participants). Moreover, most participants(36) did not restrict themselves to either argue in favour or againstneuroimaging. They showed individual preferences, but were ableto explore multiple frames within the same example. Table 5summaries the frames articulated by the participants per case.

Some participants found it difficult to discuss the desirability ofneuroimaging applications without having detailed informationregarding the technical aspects and possibilities of neuroimagingand started to critically question the technical reliability and pos-sibilities. As a result, about half of the arguments linked to theuncertain tool frame in Case 1 originated from unfamiliarity withneuroimaging. These decreased to zero in the following cases andare a consequence of the group dynamics: arguments once broughtforward will be taken for granted in later discussions. The sameapplies for arguments from an objective tool frame. These were notconstantly repeated, but participants referred back to earlier dis-cussions and arguments were not discussed in-depth again. As aresult, arguments derived from uncertain tool and objective toolframes decreased to respectively one and zero in Case 4. This im-plies that, although fewer arguments were brought forward toarticulate the desirability, this does not mean that these argumentswere less applicable to the case discussed.

The analysis shows that most (40/46) participants considerCases 1, 3 and 4 conditionally desirable. With this, they articulatedthe importance of freedom of choice, the right to know or to be keptin ignorance and guaranteed privacy. Besides, neuroimaging ap-plications should not have negative social or economic implicationsfor the individual/patient. For example, neuroimaging use to searchfor additional disorders, life styles and sexual preferences and useand abuse by commercial parties, such as insurance companies andmortgage lenders. Without these prerequisites neuroimaging ap-plications are considered undesirable, regardless the goal of

Table 3Identified technological frames of neuroimaging.

Neuroimaging as Keywords Explanation

An advancement tool not leave options unused;benefit humanity

Knowledge resulting from neuroimaging use and their applications should be usedto benefit humanity. Advancements in neuroimaging may provide options to helppeople stay healthy or to become healthy.

An objective tool better than soft measurements; lessfraud; fewer mistakes

Neuroimaging applications are an improvement compared to current assessmentmethods because they cannot be manipulated by the patient, and the resultsgenerated by these technologies depend less on insights and interpretations ofdoctors. Consequently, the generated data is considered to be exact, factual,irrefutable and solid.

A reductionistic tool holistic; subjective; ignores nurture,identity and inner strength of people

The brain is a very complicated organ and understanding its functions is limited,especially with respect to mental disorders. The brain cannot be seen separatelyfrom the body and is influenced, amongst other things, by nurture. The use ofneuroimaging reduces the person to a scan, excluding subjective aspects.

A tool that intervenes innaturalness

not playing God; acceptance of fate; lifeas it is meant to be

Life is given (by God), cannot be controlled and this should sometimes be accepted.It is questionable whether it is desirable to ‘play God’, considering that we should letnature determine the progression of life, rather than intervening withneuroimaging.

A slippery slope long-term consequences;medicalisation; boundary illness-healthneeded

Neuroimaging is part of constantly expanding technological developments andapplications in the medical sector. These developments may pave the way for asociety which aims to treat, diagnose and prevent any disorder as quickly aspossible. In such a society, everyone might be labelled as ill in the search forperfection. The use of neuroimaging to prevent, diagnose and treat diseases isacceptable but a boundary between health and illness needs to be set to prevent theenhancement/treatment of ‘normal’ and healthy people.

An uncertain tool distrust in technical reliability andpossibilities; potential side-effects;psychological burden

The technical reliability and possibilities of applications are uncertain. Long-termconsequences are questioned, focussing on potential side-effects and thepsychological burden that people could experience as a result of neuroimaging.

Table 4Identified frames of the socio-technical system surrounding neuroimaging technologies.

The socio-technicalsurrounding neuroimagingshould be

Keywords Explanation

trusted confidence; faith The acts, competences and knowledge of experts developing and working with neuroimaging can be trusted interms of doing good and determining the correct treatment plan. Furthermore, science will progress towardsnew medical options and the government is the correct body to regulate and prevent misuse of neuroimaging.

accepted personal action willnot work; taketechnology as itcomes

Future events are inevitable, which also applies to neuroimaging applications. Citizens have no power toinfluence the future and take a passive stance. Individuals can, for example, live as healthily as possible and takeprecautions but not all disorders can be prevented (e.g. brain haemorrhage).

distrusted and feared distrust of doctors,commercial partiesand government

General distrust of doctors, commercial parties and the government. Distrust of doctors regarding theirpotentially dubious motives (e.g. screening for lifestyle habits) and their possible preference for a certaindiagnosis or therapy. Distrust in the government's approach to regulate and prevent misuse of neuroimaging. Inaddition, distrust and fear of the use of neuroimaging by commercial parties and the possible consequenceswhen commercial parties gain access to data generated by neuroimaging use

M.E. Arentshorst et al. / Technology in Society 45 (2016) 8e1812

application. Case 2, the use of neuroimaging to determine a pre-disposition, is regarded undesirable anyhow by seven participants.For the other participants (39), this example is desirable undercertain prerequisites which will be described in detail below.

4. Patterns of arguments

The different frames resulted in different patterns of argumentsin each case. Despite the different frames, the patterns of argu-ments were the same for each neuroimaging application discussed.These are described in detail below.

4.1. Case 1: diagnose earlier and faster

The first response to this case was positive for the majority ofthe participants (37/46). Diagnosis with neuroimaging was seen asclear and evidence-based (objective tool). The participants consid-ered that this application was desirable to detect disorders morequickly and in an early stage of disorder development. With this,the desirable assumed implication was delivery of relevant

therapeutic options more quickly, and reducing uncertainty of pa-tients and their social environment (advancement tool). In response,other participants questioned the reliability, accuracy and potentialof neuroimaging (uncertain tool). These questions were againrebutted from advancement tool or objective tool frames, as illus-trated in the following example from focus group 4. The corre-sponding frames are added between brackets.

Participant 1: Well I think that for many people the diagnosis ofmental disorders is, well, now I finally know what I have.[advancement tool]

Participant 3: Faster diagnosis! [advancement tool]

Participant 1: But then again, on the one hand yes, but howreliable is it? [uncertain tool]

Participant 5: Well I think that a lot of suffering, on all fronts, isreduced. If you know what is there and consequently can starttreatment quickly, that is only positive. [advancement tool]

[Focus group 4]

Table

5Numbe

rof

participan

tsper

fram

eusedin

argu

ingthedesirab

ility

ofthecases.

Neu

roim

agingtech

nolog

ical

fram

esfram

esof

thesocio-tech

nical

system

surrou

ndingneu

roim

aging

Exam

ple

NI

applic

ations

adva

ncemen

ttool

objective

tool

reductionistic

tool

tool

that

interven

esin

naturalness

slippery

slop

euncertain

tool

trust

acceptance

distrust

&fear

Totalnr

participan

ts/

fram

e/per

case

Case1

Focu

sgrou

p1-6

2018

101

412

123

1393

Case2

Focu

sgrou

p1-6

190

02

155

08

1261

Case3toge

ther

Focu

sgrou

p1-6

265

81

49

54

769

Case4

Focu

sgrou

p3-6

170

11

31

20

025

Totalnumbe

rparticipan

ts/frameforallcases

8223

195

2627

1915

32

M.E. Arentshorst et al. / Technology in Society 45 (2016) 8e18 13

This pattern of stating desirable consequences and questioningundesirable consequences resulted in a discussion concerning thedifferences between neurological/somatic and mental disorders. Infive of the six focus groups (except focus group 3), this discussiontook place spontaneously. The participants articulated a differencebetween a physical (neurological) disorder versus a disorder that isin the person him/her self, namely ‘a deviation from the normal’. Asexplained by one of the participants:

The distinction in certain diseases, I think, is clear in thisexample. Depression or Parkinson's disease, I think that isanother category I would almost say (… ) I have the feeling, butthat is just a feeling, that Parkinson's and Alzheimer's diseaseare really just mechanical malfunctions. That there are certainsignals that can no longer be transmitted. While depressionseems to me a disorder that has not so much to do with thebrain, but more with how people live their life, what kind ofbeliefs they have and things like that.

[Focus group 2, participant 1]

After the distinction between ‘physical’ and ‘mental’ disorderswas made, the discussion changed. From then on, the majority ofparticipants considering that setting a diagnosis for neurologicaldisorders was desirable under the prerequisites described above,articulated their arguments from advancement tool or objective toolframes. Regarding mental disorders, participants who consideredthe diagnosis of mental disorders with neuroimaging as morespecific with lower or no error rate, especially when compared toquestionnaires and behavioural tests (which were seen as subjec-tive methods), argued from an objective tool frame. These partici-pants were positive about the fact that patients cannot manipulatea brain scan and that diagnosis is not dependent on the insights andinterpretation of a doctor. On the other hand, there were partici-pants arguing that mental disorders are very complicated and thatneuroimaging reduces the person/patient merely to an ‘image’(reductionistic tool). They emphasised the importance of includingexperiences of both doctor and patient and nurture in setting anappropriate diagnosis. These arguments were frequently combinedwith questioning the ability of neuroimaging to diagnose a mentaldisorder (uncertain tool). Consequently, some participants reasonedfrom different technological frames depending on which disorderwas diagnosed, as shown in the following example:

Well, yes, with such a vague complaint like depression I thinkwell, sorry, but what has a machine to do with this? First, talk tothe person [reductionistic tool]

(....)

My father worries about these kinds of issues [memory loss,possible Alzheimer's disease] and I was at the doctor's and Iasked the doctor if he could determine this somehow. And I wasthere, during the diagnosis, and then he came with such a pa-thetic questionnaire and I thought, goodness, I have no confi-dence in this, frankly. I would much rather that neuroimagingcould help him then.

Facilitator: And why is that?

Yes, how it feels, then I suddenly have more confidence in it,oddly enough. (… ) Because, it seems as if it is more the bodyand less the person. [objective tool]

[Focus group 2, participant 2]

M.E. Arentshorst et al. / Technology in Society 45 (2016) 8e1814

4.2. Case 2: determine a predisposition

The first responses to this case were primarily negative (42/46).Participants argued that a predisposition is always uncertain (theonset of the disorder is uncertain) and that knowing a predisposi-tion would result in a psychological burden (uncertain tool). Inresponse, others argued that determining a predisposition offersthe possibility of taking precautions, generate scientific knowledgein order to develop therapeutic options, and save health care costs(advancement tool and trust). Compared to Case 1 this is a shift inarguments resulting from uncertain tool frames, which now focuson the uncertainty and psychological burden of neuroimaging ap-plications instead of uncertainty related to neuroimaging technol-ogies. In the in-depth discussion, arguments were extended topossible negative situations in the future (slippery slope). Moreover,some participants reinforced their own position via this pattern asillustrated in the following example:

Participant 3: So that you can tell at a very early stage whetheryou develop something or not. If you then say, well there is achance that you will develop it and later it appears that you didnot, what then? That is a dilemma. [uncertain tool]

Participant 4: I think more about risk groups and that kind ofthings. That you have people, where, for example, cancer is acommon disease in the family, who then get examined moreoften, preventively or receive preventive treatments. [advance-ment tool]

Participant 3: And what if you don't develop it in the future?[uncertain tool]

Participant 4: Yes, well, I think more about risk groups to checkthem more often.... [advancement tool]

Participant 3: Oh yeah, that certainly, yes.

Participant 4: To detect things.

Participant 3: Yes, I completely agree.

Facilitator: Okay, so it [the case] is desirable for risk groups?

Participant 3: Yes, just to check. But suppose that you are goingto take medication at a young age, while there is nothing wrongwith you … [slippery slope]

[Focus group 4]

This example shows the effect of discussing the desirability ofpotential neuroimaging applications with other participants: par-ticipants gain insights into each other's frames, reflect on that,agree or disagree with the other participants, change or adjust theirframe when applicable, and explore the issue more in-depth.

4.2.1. Knowing an early diagnosis or predispositionBesides, participants discussed the burden of knowing a pre-

disposition and early diagnosis. These applications were seen bymany participants as more or less the same; a situation in which asymptomless person receives a diagnosis in an early stage or is inthe knowledge that he/she has an increased risk to develop a braindisorder. Therefore, this discussion took place when consideringCases 1 and 2. In discussing these situations, two kinds of reasoningwere employed. Some participants argued from an advancementtool technological frame that they would like to know the outcomein order to live the remaining time of their healthy life as optimallyas possible; to take precautions with the intention to stop thedisorder development, to reduce disorder severity, and to increasetheir recovery chance by, for example, changes in lifestyle and

medication; and to take precautions to function as optimally aspossible during their life with the disorder. Others argued fromuncertain tool technological frame and are of the opinion that theydo not want to know the outcome because this would influencetheir life negatively due to the psychological burden (for example,fear and stress). This is illustrated in the following example:

Participant 1: If you do that test and then they say to you, well,you have 75% chance that you will develop the disease and then,after half a year, would you like to know?

Participant 4: I would like to know. [advancement tool]

Participant 1: Really?! So …

Participant 6: Then the test must be reliable, of course. [uncer-tain tool]

Participant 1: No, listen!What if you just take the test, and thereis nothing wrong with you, you feel good and just take that test,and then they say you have 75% chance that you get that. You arenot allowed to smoke anymore. You are not allowed to do this,and that, you must do this. [slippery slope]

(… )

Participant 6:Well, you can, or try to do all things youwant to doin your life, though, if you know in advance [advancement tool]

Facilitator: So that would be a green card for you?

Participant 6: Yes

Participant 1: Optimist! (… ) I think I would be awfully scared.That's why I would never take such a test, not me. [uncertaintool]

[Focus group 3]

Imagining situations where there are no therapeutic optionsavailable, participants who were in favour of taking precautions toprevent or delay the onset of a disorder, switched to the view of notwanting to know the outcome. Participants who valued being ableto live and function their remaining life as optimally as possible,still argued that the applications would be desirable. Moreover,they also valued knowing the cause of future disorders. Thisknowledge would reduce the psychological burden of uncertaintyby providing certainty about what is wrong and what disorderscould potentially be expected.

4.3. Case 3: monitor the effectiveness of medication, the progressionof a disorder and the development of a predisposition

All participants (46/46) put a green card or a green and red cardin front of them after reading Case 3. The discussions started witharticulating the desirable possibilities (advancement tool). Moni-toring the effectiveness of medication was expected to giveevidence-based insights in order to tailor the treatment towardsthe patient. Desirable implications of this were considered to be ashorter duration of treatment which, in turn, would decrease theburden on the patient in the following ways: less time spent onfinding suitable medication and visiting the doctor; fewer side-effects of medication, including damage caused by over-medication; and a lighter psychological burden. Moreover, with ashorter duration of treatment, people could return to full func-tioning in society. Applications to monitor the progression of braindisorders were seen as desirable when the diagnosis was set inorder to adjust the treatment when necessary. Applications tomonitor the development of predispositions were only seen as

M.E. Arentshorst et al. / Technology in Society 45 (2016) 8e18 15

desirable when the predisposition was determined under theprerequisites formulated.

In the in-depth discussion arguments were notmerely related toreliability of neuroimaging (uncertain tool) as in Case 1, but resultedalso from reductionistic tool and distrust and fear frames. They relateto the potential harmfulness resulting from frequent neuroimaginguse (uncertain tool), the potential use of data outside the health caresetting (distrust and fear) and a focus of doctors mainly on medi-cation, which would exclude the patients' emotions and nurturefrom the treatment process (reductionistic tool & distrust and fear).Latter was considered to be specifically undesirable concerningmental disorders. This focus, in turn, resulted in the articulation ofundesirable future situations (slippery slope) in which neuro-imagingwas considered to be a Holy Grail. This was contradicted byparticipants reasoning from advancement tool or objective toolframes. In addition, some participants argued that they trusteddoctors and the government to include patient and nurture aspectsin the treatment and not to apply neuroimaging when this isharmful (trust). This pattern of arguments is illustrated in thefollowing example:

Participant 7: You can also tailor the treatment or monitor. (… )You can see through imaging if it works, or if the treatment issufficient for that patient. [advancement tool]

Participant 1: You can also have the placebo effect: that youthink it will have an effect and it has effect for everybody else, soit must have effect for me to. And that can give enormousstrength, which is enough to heal. [reductionistic tool] Andsuppose that they say it will not work for you and then… Thereyou go.

Participant 5: At that moment, they can search for a relevantoption or a different composition. [advancement tool]

Participant 1: Yes, of course, that is correct. But I wonder, it canhelp, I believe that too, but it may also be that it is not workingand then you become a guinea pig. [uncertain tool þ distrustand fear]

(… )

Participant 4: Yes, but there are also a lot of people who receivemedication that is not working and those people have under-gone long periods of trial and error.

Participant 5: And, for them, it would be positive. [advancementtool]

(… )

Participant 1: But, for example, the case of someone who has amental disorder, who is depressed andwho receives a stimulant.Well, he is nice and cheerful today, but is he happy enough?[slippery slope]

Participant 5: I think this is really a comment, with all duerespect, of a layman. We see this in that way, but people inpsychiatry look at this very differently. [trust]

(… )

Participant 4: But I think that if you use this [neuroimaging],that you can objectively better assess someone, compared withsomeone who says of himself: I feel better today than yesterday.That is less objective than neuroimaging. [advancementtool þ objective tool]

Participant 1: Well, I dare to doubt. (....) How reliable is it?[uncertain tool]

[Focus group 4]

4.4. Case 4: personalised treatment

In general, the participants expressed the view that ‘designing’personalised treatment is highly desirable (30/31, see step 4amethodology). The initial discussion resulted in the formulation ofdesirable options (advancement tool and trust). For example, tar-geted diagnosis and treatment were perceived to be beneficial forpatients, the health care system, and society in general. Later on,some participants articulated undesirable consequences in thelong-term (slippery slope). These arguments concerned efforts toprevent and control disorders. This was considered to be the resultof a change in the boundary demarcating health from disease,resulting in ‘Brave new world’ societies in which everyone is ‘madeaverage’, and no-one is allowed to be different. Other participantsdid not articulate concerns about these kinds of potential futureconsequences and trusted the scientists, doctors and governmentto prevent these situations (trust).

4.5. Main patterns of arguments

In general, the initial discussions started with argumentsfocussing on short-term consequences for one's own future life.This resulted in discussions in which some participants argued infavour of the technology by emphasising the potential benefits ofneuroimaging (advancement tool or objective tool) which evokedresponse from other participants who questioned the possibilityand reliability of the technology and the potentially negative con-sequences of the technology (uncertain tool or reductionistic tool).Case 4 was an exception to this because, initially, only argumentsfrom an advancement tool frame were formulated. In all in-depthdiscussions, arguments were added with long-term consequencesand perceived implications of the socio-technical system sur-rounding neuroimaging on people's future lives. These are mostlyarguments against the technology and mainly aimed at creatingprerequisites for application.

5. Conclusions and discussion

Public perceptions of neuroimaging applications in health careare presented in this article, based on research undertaken in theNetherlands. This study shows that the consulted group of citizenscomprises a heterogeneous group of people that were well able toarticulate benefits, disadvantages and specific concerns regardingthe future embedding of potential neuroimaging applications. Inother words, although the citizens consultedwere not familiar withneuroimaging, they were able to shape perceptions about potentialapplications. In arguing the desirability of neuroimaging applica-tions different technological and socio-technical frames were used.Six technological frames were identified that relate to how neu-roimaging is interpreted and perceived to potentially influencepeoples future lives on short-term and long-term. Three socio-technical frames were identified and relate to trust, acceptance ordistrust of the socio-technical health system surrounding neuro-imaging. The frames are dynamic and show contextual differences.Depending on the application and its context, different frames wereemployed and related lines of argument to discuss the degree ofdesirability of potential neuroimaging application.

In discussing potential applications the same patterns of argu-ments occurred. All discussions started with arguments focussingon short-term consequences for one's own future life, arguing infavour as well as against the applications. In the in-depth

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discussions, arguments concerning potential long-term conse-quences and implications of the socio-technical system surround-ing neuroimaging were added. Because this study identifies framesand related arguments regarding concerns and desires, it showsboth rather optimistic (positive, hopes) and pessimistic (negative,concerns) framings. In this way, insight is obtained regarding theweighing made by participants and contextual differences. In otherwords, we identified what is considered desirable (acceptable) andunder which prerequisites, and what is considered undesirableunder no condition (unacceptable). New and improved diagnosisand treatment options are considered conditionally desirable by allparticipants. Preventive applications are considered desirable bymost participants (39/46) but not within a future society whichaims at preventing, diagnosing and treating potentially anything asquickly as possible. Regardless the goal of application, all citizensconsulted emphasised that freedom of choice, guaranteed privacy,the right to know or to be kept in ignorance, and informed consentshould be self-evident prerequisites. Furthermore, neuroimagingapplications should never result in negative social or economicimplications for individuals/patients.

The formulation of the prerequisites was particularly evident indiscussions concerning preventive neuroimaging use. Here argu-ments related not to the uncertainty of the technology as withother applications, but focused on the uncertainty of the predis-position or early diagnosis. Citizens consulted considered thatknowledge of a predisposition or early diagnosis would represent aheavy personal burden, resulting in a reassertion of the prerequisiteregarding the right to be kept in ignorance. In other words, neu-roimaging use to prevent disorders (risk avoidance) is regardedconditionally as highly beneficial, until the technology outcome isno longer certain. In this case, the uncertainty outweighed potentialrisk avoidance for many participants, except for those who arewilling to take almost any kind of (technological) option to obtainpotential information about their future health. This indicates thatthe technological frames are driven by a desire to maximise controlover life and related risk avoidance, which resulted in argumentsregarding the desirability to prevent one's own disorders. At thesame time, concerns regarding naturalness (for example enhance-ment) and certainty (for example of diagnosis) were also raised.The desirability of neuroimaging applications becomes controver-sial when specific applications embody conflicting values and de-sires. Depending on the weight given to these different values anddesires, the application is perceived as desirable or undesirable. Thevalue of naturalness became evident in a discussions relating to theframe of neuroimaging as a ‘tool that intervenes in naturalness’; towhether technology or nature (or God) should determine theprogression of life; and to the frame ‘neuroimaging as a slipperyslope’ which focussed on long-term consequences related toenhancement and medicalisation. Citizens consulted valuingnaturalness considered that applications which prevent, diagnoseand treat brain disorders are desirable, but that the enhancementand treatment of ‘normal’ and healthy people is undesirable. In thiscase, concerns regarding naturalness outweighed desired controlover life. In case of future neuroimaging applications which coulddetermine predisposition to certain disorders, citizens consultedgenerally chose for concerns regarding certainty above desiredoptions for risk avoidance, resulting in arguments questioning thereliability of the technology and expressions of distrust and fearregarding the socio-technical system surrounding these technolo-gies. In summary, it appears that concerns regarding the endorsedvalues of certainty and naturalness are preferred to desired statesas control over life and risk avoidance. As a consequence, optionsthat are considered enhancement and options to determine apredisposition might be considered controversial.

In addition, when relating our results to the research of

Pickersgill and others [11], we gain insight into another potentialconcern/barrier. They showed that in articulating subjectivity thebrain is perceived as the locus of identity, and at the same time isperceived as just another body part and not all things can bereduced to brain structures and processes. Some future users in theresearch of Pickersgill and others perceived brain research, incertain situations, as a threat to longstanding understanding ofselfhood, others as giving more insight into selfhood. This ambiv-alence was also visible in our research. Participants perceived thebrain as the locus of brain disorders and at the same time the brainwas perceived as not all determinative with respect to disorders.Subsequently, most participants perceived disorders in terms of thebrain in particular contexts (i.e. certain disorders). The potentialresulting perceived threat of neuroimaging becomes specificallyvisible in discussions regarding neuroimaging applications formental disorders. Participants who perceived these applications aspotentially providing more insight and understanding of mentaldisorders, i.e. neuroimaging as an objective and/or advancementtool, emphasised the potential advantages of neuroimaging(without stating that neuroimaging is the only possibility to di-agnose or treat mental disorders). Participants who perceived theseapplications as conflicting with their views on how mental disor-ders are part of a broader process, that is neuroimaging as reduc-tionistic tool, felt threatened and emphasised the reductionisticaspects of neuroimaging and the importance of including nurtureaspects in the diagnostic and treatment process. Therefore, optionsto diagnose mental disorders based on only technology outcomesmight be considered controversial.

Although participants showed a preference to argue in favour oragainst neuroimaging applications, they explore multiple frames.This probably relates to the emerging aspect of neuroimaging.Given that the applications under consideration do not (yet) exist,individuals have an intuitive preference for a certain frame butconsider easily other frames based on arguments of other partici-pants or because one point of viewwas dominant in the discussion.This space for manoeuvre provides stakeholders with the oppor-tunity to increase the effectiveness of communication of neuro-scientific discoveries to reduce the risk of unrealistic expectationsand ethical or social concerns [24,18].

Substantively, arguments brought forward in this research canbe related to arguments in discussions about (prenatal) genetictesting.With respect to the structure, these discussions correspond.Research shows that citizens regard prenatal genetic testingconditionally desirable depending on the severity of the disorderand under prerequisites such as the right to know or to be kept inignorance, freedom of choice and informed decision making[22,25,26]. In addition, arguments relate to a balance betweencontrol over life versus fate of nature. Moreover, comparisons with(prenatal) genetic testing were spontaneously made by the par-ticipants in the focus groups, which might imply that the structureof the discussions surrounding medical neuroimaging will notdiffer largely from those surrounding (prenatal) genetic testingapplications.

5.1. Inventory of public perceptions in an early phase of technologydevelopment

With respect to the methodology, this study shows that thefocus group design of this study is a suitable method to inventory abroad range of public perceptions regarding an emerging technol-ogy that is not yet familiar amongst participants. Although moststudies examine how individuals ascribe meaning to a noveltechnology in the initial period of technology adaption [e.g. 23, 27]we demonstrated that identification of different interpretations of atechnology before the institutionalisation is possible and gives

M.E. Arentshorst et al. / Technology in Society 45 (2016) 8e18 17

insights into potential incongruent technological frames when thetechnology will be implemented. As Orlikowski and Gash showed[23, p.204], different interpretations of a technology “result unin-tendedly and unknowingly in misaligned expectations, contradic-tory actions, and unanticipated organizational consequences.”Identifying different technological frames in an early phase oftechnology development, and examining ongoing sense-making ofa technology, offers thus options to steer towards more responsibleinnovations (that is align frames-shared interpretations). Themethodology applied in this research proved to be a suitableapproach to gain understanding of a healthcare technology in thepublic arena before its institutionalisation and can most likely alsobe applied to examine ongoing sense-making of a technology. As aconsequence, the methodology applied might be considered byother actors, e.g. policy and decision-makers, to gain understandingof sense-making of a technology in the public arena before, during,and after its institutionalisation.

As a consequence of the focus group design, the participantsreflected and reacted critically to the cases provided withoutdetailed input of people concerned with or affected by neuro-imaging. Considering that many medical applications are currentlyimplemented without consultation of the general public, theobserved frames and patterns of arguments probably correspond tothe situation when the concerns of the general public are not takeninto account. With this it is important to note that sense-making isan ongoing process when interacting with the technology over timeand new interpretationsmay emerge [28]. This implies also that thelines of arguments are not static. In a different context, or atdifferent time-periods when the technology becomes or is insti-tutionalised, different citizens could make new interpretationswhich may be in contrast to those observed in this research.Therefore we are cautious with generalizing our findings to othercountries and periods of time.

Furthermore, some remarks can be made concerning thecomposition of the participants. Even thoughwe aimed at a balancebetween genders within one focus group and mixed social-demographic factors, two focus groups (Focus groups 1 and 2)consisted largely of women and all participants were highlyeducated. The results show no major differences in frames or pat-terns of arguments employed between these groups and the othergroups. Additionally, wewere not able to find differences in appliedframes or lines of arguments related to age, gender or educationallevel in this research.

It is also important to take into account how values and interestsof the researchers might have influenced participant responses andthe interpretation of the data. We tried to avoid advocating oropposing to the applications discussed and made effort to value allarguments equally in the analysis. Although, participants mighthave had the idea that there was a ‘right’ answer we were lookingfor, and with this formulating arguments which they thought wewould like to inventory, the two facilitators received the same ar-guments from participants, indicating that we most likely mini-mised influencing the participants responses. Additionally, sincealmost all participants were not aware of neuroimaging de-velopments prior to the discussion, we probably have contributedto an awareness rising.

5.2. Towards responsible neuroimaging innovations

Neuroimaging developers, consulted in a previous phase of thisresearch, consider preventive options to be highly desirable undersome prerequisites, such as the availability of therapeutic options[29]. This study shows that preventive neuroimaging options couldbe desirable but relate to several concerns of Dutch citizens. Toestablish more responsible neuroimaging applications, relevant

actors need to become mutually responsive [4], and participants'concerns should be taken seriously in order to promote responsibleembedding of neuroimaging. If these concerns are not taken intoaccount, we argued that current values might clash with someapplications, resulting in societal anxiety. In these circumstances,current concerns, such as the concern that neuroimaging willdetermine autonomously (without interpretation of doctor)whether one has amental disorder, might develop into a script [30].In such a script, neuroimaging could be framed as technologies that‘visualise’ the brain and personal identity, resulting in discrimi-nating processes and stigmatisation of individuals. Contrarily, Illesand others [31] showed that patients perceive the potential ofneuroimaging to diagnose and treat depression as a means ofreducing stigma. Scripts will only develop when the technology isdeveloped. At present only concerns and expectations can beidentified which are likely to affect positive and negative scripts ofneuroimaging.

One could argue that when policy-makers and health pro-fessionals make sure that neuroimaging applications are wellorganised and there is proper information dissemination, many ofthe identified concerns in this research are managed sufficiently.For example, by setting boundaries and rules for medical neuro-imaging use and by providing sufficient and unbiased information.With respect to the latter the underlying assumption is that stra-tegies to augment the knowledge of the general public will result ina knowledgeable public that accepts the new technology. However,previous research has shown that such strategies have neitherresulted in a reduction of societal concerns, nor in increased publicacceptance of technologies [6,21,32]. Knowledge has shown to beone minor factor in explaining the variance in public opinionsabout science and technology, while other factors such as values,trust and the framing of technologies have a major role in shapingpublic opinions of emerging science and technologies [16,33e35].Identified concerns of Dutch citizens in this research shouldtherefore not be dismissed as a lack of scientific knowledge and/oras emotional concerns that can subsequently be addressed by in-formation dissemination. Instead, these concerns should be takenseriously, for example via the interaction of different actors indialogue meetings and be taken up in the development and insti-tutionalisation of medical neuroimaging applications.

In a next phase of our research different actor perspectives areintegrated through mutual learning in dialogue meetings with theaim to result in mutual understanding and the identification ofmore shared desirable future directions of medical neuroimaging.Above sketched potential difference between public and patientperspectives regarding desirable implications shows the impor-tance of these kinds of processes.

Acknowledgements

This work was supported by the thematic programme Respon-sible Innovation. Ethical and societal exploration of science andtechnology of the Netherlands Organisation for Scientific Research(NWO) [grant number 313-99-180].

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