10.6092/issn.2038-3460/17606
Vaccine hesitancy constitutes a pressing social issue. Media and institutions frequently portray vaccine-hesitant parents as ignorant and anti-scientific. This exploratory study – conducted in the Autonomous Province of Trento (Italy) in 2018 – analyses organized parents opposing the reinforcement of childhood vaccination mandates. Semi-structured interviews with vaccine-hesitant parents and physicians with experience with vaccine-hesitant patients, and participant observation were conducted to understand the perceptions of childhood vaccination mandates, focusing on narratives regarding the role played by science and scientific experts in the vaccine debate. Analysed through the lens of sociology of health and Science and Technology Studies, results highlight that vaccine hesitancy cannot be reduced to anti-scientific attitudes. Hesitant parents’ vaccination decisions are based on a different perspective of their children’s health and on alternative forms of expertise; there are persistent weaknesses in the doctor-patient and expert-citizen relationship in a deeply dualistic vaccine-related debate; and there is the need for a dialogue between institutions and vaccine-hesitant parents.&nbsp;
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Rediscussing The Primacy of Scientific Expertise: A Case Study on Vaccine Hesitant Parents in Trentino
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Eliana Fattorini
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Rediscussing The Primacy of Scientific Expertise: A Case Study on Vaccine Hesitant Parents in Trentino
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T/S                                                                                                                ESSAY



Rediscussing the Primacy of Scientific Expertise: A Case Study
on Vaccine Hesitant Parents in Trentino

Eliana Fattorini
University of Trento



Corresponding authors                    Abstract
Eliana Fattorini                         Vaccine hesitancy constitutes a pressing social issue. Media and institutions
Doctoral School of Social Sciences       frequently portray vaccine-hesitant parents as ignorant and anti-scientific.
Department of Sociology and              This exploratory study – conducted in the Autonomous Province of Trento
Social Research, University of           (Italy) in 2018 – analyses organized parents opposing the reinforcement
Trento (Italy)                           of childhood vaccination mandates. Semi-structured interviews with vac-
Via Verdi 26, 38122 Trento (TN)          cine-hesitant parents and physicians with experience with vaccine-hesitant
   eliana.fattorini@unitn.it             patients, and participant observation were conducted to understand the per-
                                         ceptions of childhood vaccination mandates, focusing on narratives regard-
Submitted: March 10, 2022                ing the role played by science and scientific experts in the vaccine debate.
Accepted: May 5, 2023                    Analysed through the lens of sociology of health and Science and Technolo-
                                         gy Studies, results highlight that vaccine hesitancy cannot be reduced to an-
                                         ti-scientific attitudes. Hesitant parents’ vaccination decisions are based on a
                                         different perspective of their children’s health and on alternative forms of ex-
                                         pertise; there are persistent weaknesses in the doctor-patient and expert-cit-
                                         izen relationship in a deeply dualistic vaccine-related debate; and there is the
                                         need for a dialogue between institutions and vaccine-hesitant parents.

                                         Keywords
                                         parental vaccine hesitancy; childhood mandatory vaccination; trust in sci-
                                         ence and scientific experts; alternative expertise; reflexive patients; science
                                         communication.




1. Introduction

   In a context of increased global health threats (Daszak et al. 2020; The Lancet Planetary Health
2021), including the recent Covid-19 pandemic, and the development of new vaccines, the global
relevance of the phenomenon of vaccine hesitancy has come to the fore. Vaccine hesitancy can be
defined as “a delay in acceptance or refusal of vaccines despite availability of vaccination services”
(MacDonald et al. 2015, 4163). It is a complex phenomenon, which is both country-specific and
vaccine-specific, and can vary over time. Given its widespread occurrence, vaccine hesitancy was
recognized by the World Health Organization as one of the “ten threats to global health in 2019”1.
   Vaccines have been designed to prevent pathogen-specific infections (Pardi et al. 2018), reduc-
ing the hazards and risks of contracting vaccine-preventable diseases. Vaccines are technologies

TECNOSCIENZA. Italian Journal of Science & Technology Studies                      © The Author(s) 2023
14(1) pp. 77-103 ISSN 2038-3460                                                    Attribution 4.0 International (CC BY 4.0)
DOI: 10.6092/issn.2038-3460/17606                                                  www.tecnoscienza.net
Fattorini                                                                                           78

that have both a global and a more personal, local characteristic. They are “produced, distribut-
ed and monitored within systems that are equally globalized” (Leach and Fairhead 2007, 2) to
potentially reach a global population (with specific attention to children) and, at the same time,
they reach into the private health sphere of individuals. As technoscientific innovations, vac-
cines have a “hybrid” character in the public debate, requiring the simultaneous management
of “technical” uncertainties with those related to their social, economic, and political purposes
and implications (Bucchi and Neresini 2006). Indeed, as the Covid-19 pandemic has shown,
technological, scientific, economic, political, and cultural aspects of vaccines often appear to be
inseparable, bringing together fears of ill health with those of excessive medicalization, adverse
events following immunization (AEFI)2, and the increasing centralization of power and eco-
nomic resources in the hands of few pharmaceutical companies. Indeed, uncertainty around
vaccines is also due to their “hybrid” character in the public debate (Bucchi and Neresini 2006).
   In recent years, several European countries have adopted revised vaccination strategies, intro-
ducing or increasing the number of mandatory vaccines for children, and embracing different ap-
proaches to (non-)compliance (Odone et al. 2021). Italy was the first European country to intro-
duce an increased number of mandatory vaccines in line with its official role as a leader in vaccine
strategies worldwide – in accordance with the Global Health Security Agenda of 2014 (Centers
for Diseases Control and Prevention 2014). When addressing vaccination policies and strategies,
as well as other public health issues, a delicate balance between individual rights and collective
interests should be considered. The choice between a more “traditional” strategy focused on im-
posing a vaccination obligation contrasted with a strategy focused on the recommendation of
vaccines, depends on how institutions have decided to manage vaccination dissent. In either case,
both the communication strategies adopted, and the broader relationship established between
institutions (be they health, political, or scientific) and citizens over time, play an important role.
   The motivations that lead to parental vaccine hesitancy have often been misunderstood and
misinterpreted by the media and political and health institutions – leading to a sharp polariza-
tion of the vaccine-related debate (Brunson and Sobo 2017; Vanderslott et al. 2022). Explain-
ing vaccine hesitancy in terms of “the media, ignorance and misinformation, class or predispo-
sition” can lead to misleading and ineffective policies (Poltorak et al. 2005, 718). It is similarly
unproductive for political and health institutions to approach the phenomenon as caused by
either a general distrust in science (and scientists) or a general scepticism towards vaccination
(Bucchi et al. 2022; Peretti-Watel et al. 2015), and by accusing vaccine-hesitant parents of being
anti-scientific (Gottlieb 2016; Ward et al. 2019). Framing vaccine hesitancy as a fight against
science and scientific expertise does not help to increase trust in vaccines; it reduces “the con-
troversy to the status of vaccine science” (Goldenberg 2021, 15). Rather, different types of
expertise – not only technical – should be considered when analysing the vaccination debate.
   This paper intersects the sociology of health perspective with science and technology studies
(STS) allowing for the study of the role of vaccine-hesitant parents’ expertise in challenging the
primacy of scientific authority as well as the main models that are deployed to manage (public
and individual) health. Specifically, the paper aims to understand the main elements that are
involved in the relationship of vaccine-hesitant parents with science and scientific experts –
including healthcare professionals. This study presents the results of an exploratory qualitative
case study conducted in the Province of Trento (i.e., Provincia Autonoma di Trento) located in
79                                                                       Tecnoscienza. 2023. 14(1)

the northeastern part of Italy. The research has been carried out in 2018, shortly after a national
reinforcement of childhood vaccination obligations, which increased the number of mandato-
ry vaccines and introduced sanctions for non-compliance. The study is based on participant ob-
servation and 26 interviews – 21 with organized vaccine-hesitant parents and 5 with physicians.
   Considering childhood vaccines as technoscientific innovations to highlight the complex
relationships between science, technology, and society, the paper first gives an overview of the
main drivers of parental vaccine hesitancy. It then focuses on the role played by alternative
expertise and specific vaccine-hesitant parents’ approach to their children’s health in guiding
the vaccination decision-making process. Using case study data, the paper explores the role
played by information-seeking for vaccine-hesitant parents, who actively engage in making
their own research to build their expertise and make “informed” vaccination decisions; the
elements that characterize the relationship of vaccine-hesitant parents with healthcare pro-
fessionals; and the ways in which those parents perceive science and scientific experts. The
study finds that hesitancy cannot be reduced to a set of anti-scientific positions; rather, vac-
cine-hesitant parents’ criticisms are mainly directed at scientific experts and their paternalistic
approach. Particularly, vaccine-hesitant parents perceive the doctor-patient and expert-citizen
relationships as becoming increasingly weakened. This is mainly due to the social implica-
tions of the re-enforcement of vaccine requirements, the lack of recognition and legitimacy
of vaccine-hesitant parents’ concerns as well as the relevance of their expertise.


2. Parental vaccine hesitancy and vaccination decisions
   Fears for adverse events following immunization (AEFI) are among the most cited reasons for
either refusing childhood vaccines (McKee and Bohannon 2016; Facciolà et al. 2019) or anti-Cov-
id-19 vaccines (Markovitz and Russo 2020; Salyer 2020). Trust plays a fundamental role in vac-
cination decisions and allaying fears about AEFI. Vaccine confidence can be influenced by trust
in vaccine-related policies, in the products (i.e., vaccines and their components), the providers,
and the infrastructure that supports such programmes (Goldenberg 2021; Larson et al. 2015).
Vaccine confidence can also be influenced by trust in key actors – including scientific experts.
The safety and efficacy of vaccines are additional elements that influence decisions on whether
to be vaccinated and/or to vaccinate (Bucchi et al. 2022; Larson et al. 2018; Lazarus et al. 2020).
   Parental vaccine hesitancy is “complex and multifaced” (Díaz Crescitelli et al. 2020, 43). As
pointed out by Dubé et al. (2021, 177), the “state of ambivalence toward vaccination highlights
legitimate doubts and concerns about vaccines”, highlighting vaccine-hesitant parents’ wish
to discuss and engage with vaccine-related uncertainties (Kirkland 2012; Leach and Fairhead
2007). Political and health institutions, however, have not recognized that vaccine-hesitant
parents address the vaccine safety issue from a different perspective, displaying individualized
perception of risks that “makes the presence of rare but serious adverse events a safety priority
rather than, as health officials see it, a reasonable risk” (Goldenberg 2016, 564). Vaccination
scepticism is not constituted by a homogeneous front of parents opposed to vaccines – nega-
tively labelled as “No-Vaxxers” (or “anti-vaxxers”). Instead, vaccine hesitancy is constituted by
different “gradations of [vaccination] acceptance” (Streefland et al. 1999, 1709).
Fattorini                                                                                       80

   As highlighted by Reich (2016, 11), “we live in an age of personalization” in which “we see
heightened efforts to personalize medical care to meet the desires and needs of the individu-
al”. Thus, many parents engage in what the author defined as “individualist parenting”, i.e.,
involving a significant investment of time and energy in planning the best strategies to keep
children healthy. This parental commitment results in increased attentiveness to children’s
needs as well as demands for more personalized institutional responsiveness (Reich 2016).
The fact that vaccine safety has been demonstrated from a public health point of view is
not considered sufficient evidence for parents who are concerned to know whether vaccines
are safe for their own children (Goldenberg 2021). Thus, vaccine-hesitant parents adopt a
“particularistic” perspective on children’s health (Leach and Fairhead 2007) that leads them
to carefully evaluate the current or potential impact of vaccines on their children’s particu-
lar health condition. Consequently, in deciding whether to vaccinate their child and against
which disease(s), such parents first consider their children’s health history as well as their
family health history. Furthermore, they evaluate the likelihood of their children getting a
vaccine-preventable disease (VPD) and what the impact of the VPD would be. Vaccine-hesi-
tant parents do not necessarily underestimate the potential negative consequences of VPDs.
However, they think that vaccination is not the only tool for prevention and that institutions
overestimate the risks of infections as well as vaccine efficacy (Blume 2006; Rogers and Pil-
grim 1994). In this way, vaccine-hesitant parents often ask for an individualized vaccination
schedule and refuse to vaccinate their children according to a national, one-size-fits-all im-
munization schedule (Dempsey et al. 2011; Klugar et al. 2021). As highlighted by Leach and
Fairhead (2007, 51), this request can be considered part of a broader societal shift towards
“more individuated [childcare] regimes adapted to the particularities of each child”.

  2.1 Parental reflexivity and alternative knowledge production

   Studying the complexity of vaccine-related attitudes moves beyond arguments based solely
on the safety and efficacy of vaccines (Widdus and Larson 2018). Indeed, in their research, Pol-
torak et al. (2005) highlighted that mothers’ engagement with the measles, mumps, and rubel-
la (MMR) vaccine is particularly influenced by experiential factors such as personal histories,
childbirth events, and levels of sharing other parents’ concerns. Experiential factors construct
parents’ “experiential knowledge” (Borkman 1976, 446) i.e., the “truth learned from personal
experience with a phenomenon rather than truth acquired by discursive reasoning, observa-
tion, or reflection on information provided by others”. Therefore, personal experiences, per-
sonal judgements and feelings become of primary relevance in defining what is true. To further
examine this phenomenon, van Zoonen (2012, 57) introduced the concept of “I-pistemolo-
gy” – i.e., “the self as the origin of all truth”. According to the author, especially in situations
of high epistemological uncertainty in which it is not clear whom to trust and what is true,
one of the strategies that people can adopt to cope with this insecurity is to turn themselves
into “an alternative source of knowing and understanding” (van Zoonen 2012, 60). More
recently, Crabu et al. (2023) looked at the health-related beliefs of concerned communities
and how their claims were (partially or totally) refused by scientific authorities during the Cov-
id-19 pandemic. Crabu et al. (2023, 149) highlighted that the “refused styles of thought” are
81                                                                          Tecnoscienza. 2023. 14(1)

constituted by experiential expertise used “to reframe the body in a process of self-care, thus
validating a corpus of refused knowledge through direct personal experience”. By applying de-
marcation strategies and narratives, “with respect to the prevalent biomedical paradigms”, the
concerned communities acquire “experiential epistemic autonomy”. Experiential knowledge
and expertise are thereby co-created, shared, and mobilized by concerned communities thus
producing alternative ways and meanings to manage public and individual health.
   As highlighted by several authors in the field of STS (Callon 1999; Turner 2001; Wynne
1996), different types of expertise can be both facilitated and/or hampered depending on the
context considered. This is especially true in the healthcare field, which has led to the rise of
alternative forms of expertise, based on the experiences and interests of a plurality of stake-
holders – including parents. In the medical field, scientific expertise is not only technically
oriented knowledge but also socially constructed knowledge (Epstein 1996; Kerr et al. 2007).
Indeed, according to Jasanoff:

     scientific knowledge, in particular, is not a transcendent mirror of reality. It both embeds
     and is embedded in social practices, identities, norms, conventions, discourses, instruments
     and institutions. (2004, 3)

   Political decisions and policy strategies – such as those of vaccination campaigns and vac-
cination mandates – include several non-scientific factors. In her study, Carrion (2018, 321)
highlighted a specific and alternative form of knowledge production based on the “social ex-
perience of motherhood”. The author pointed out that it is important for vaccine-hesitant
mothers to make informed vaccine-related decisions based on their own research. In these
decisions, vaccine-hesitant parents carefully take into consideration their children’s needs and
make “independent decisions, based on their own knowledge and intuition” (Reich 2016,
72). This parental expertise should not be belittled: parents know their family history and
health-related vulnerabilities, and both elements can play a “legitimate role in decision-mak-
ing about vaccinations” (Cassam 2021, 6).
   In this regard, the concept of reflexivity becomes relevant, understood as “the general ca-
pacity of late modern actors to reflexively consider their own health in light of medical knowl-
edge proliferated in late modern societies” (Numerato et al. 2019, 85). Reflexive reasoning
is thus included in citizens’ decision-making processes about their own, or their children’s,
health (Giddens 1991; Miah and Rich 2008). Vaccine-hesitant parents can thus be seen as
“reflexive patients”, a concept that refers to “increasingly reflexive and decreasingly deferen-
tial citizens” (Martin 2008, 41). The increased reflexivity allows citizens both to deal with
uncertainties originating from the advancements of scientific knowledge and the problemati-
zation of scientific knowledge (Beck et al. 2003). As noted by Kaufman (2010, 12), “parents
reflexively practice and ponder an ethic of care and choice” based on their perception and
evaluation of vaccine-related risks and according to their own criteria (Boholm 2003; Got-
tlieb 2016). Even if scientific expertise is requested, vaccine-hesitant parents do not blindly
rely on it, thereby “living with the potential risk of vaccines and the anxiety of ever-partial
knowledge” (Kaufman 2010, 12).
Fattorini                                                                                      82

3. Research context and methodological frame

   One of the strategies that governments can adopt to try to address a decrease in vaccination
rates is a mandatory vaccination policy, mainly oriented towards childhood vaccination. Revised
vaccination strategies, which have involved the adoption or strengthening of existing childhood
vaccination requirements, have been introduced in many countries. Since 2015, in an effort to
increase vaccine uptake rates, several high-income countries – such as Italy, France, Australia,
and Germany – have adopted increasingly more coercive childhood vaccination policies (Attwell
et al. 2021; Ward et al. 2018). Particularly, Italy was the first European country to introduce an
increased number of mandatory vaccines for children up to 16 years of age (Law No. 119/2017).
   Since the 1960s, Italy has adopted several approaches to vaccination governance: childhood
vaccines were mandatory until 1998, while between 1999 and 2016 the distinction between
recommended and compulsory vaccinations was progressively exceeded (Signorelli 2019).
Until 2016 indeed, Italy adopted a “quasi-voluntary” vaccination policy in which sanctions
for non-compliance were either rarely enforced (Attwell et al. 2018) or considered “low cost
opportunities for refusers to ‘purchase’ non-compliance” (Attwell et al. 2021, 462). In 2001,
after modifications to Title V (part II) of the Italian Constitution, regions were empowered
with increased autonomy in health policy, leading to a great legislative fragmentation of vac-
cination strategies across the country. The situation has particularly changed with the in-
troduction of Law No. 119/20173, which requires an increase in the number of mandatory
vaccines – from four4 to ten5 – for children between 0 and 16 years.
   This Law faced strong opposition from families who did not want to fulfill these vaccina-
tion requirements; some felt the need to network, looking for support to advocate for their
positions. Critics have mainly focussed on the penalties provided in this law. Those who do
not comply with the vaccination plan must pay a fine (up to 500 euros) and children up to
six years of age who are not (or only partially) immunized cannot attend public and private
nursery schools or kindergartens.
   An interesting case in the Italian vaccine-related legislative landscape is represented by the
Autonomous Province of Trento. Unlike other Italian regions, including other autonomous
regions, the Province of Trento approved resolutions that strengthened the sanctions already
provided by Law No. 119/2017 for non-compliant parents between 2017 and 2018. While
other regions, such as the Autonomous Province of Bolzano, adopted an approach that em-
phasized dialogue with parents, the Province of Trento adopted a more aggressive policy for
compliance. Trentino’s Provincial Resolutions No. 322/20186 and No. 547/20187 represent
its approach: the first introduces the suspension of monthly economic benefits (called “service
vouchers”) for non-compliant families, while the second excludes children not fully vaccinated
from summer camps. Furthermore, Trentino’s political and health authorities have introduced
the label “conforme” (compliant) and “non conforme” (non-compliant) to identify, respec-
tively, children who have fulfilled their vaccination obligations and those who have (totally or
partially) not done so. Thus, “No-Vax” and “non-compliant” labels have negatively labelled
those people who have expressed their opposition either to vaccination practices or to vaccina-
tion mandates. This has generated social tensions between those who decided to vaccinate their
children according to the national vaccination schedule and those who decided not to do so.
83                                                                                                 Tecnoscienza. 2023. 14(1)

   It is in this context that the following case study was undertaken. Conducted in the Au-
tonomous Province of Trento (Italy) between February 2018 and May 2018, it focuses on
a Free-Vax association – i.e., one that advocates for the freedom of choice in vaccination de-
cisions. Vaccinare Informati is the only Free-Vax association in Trentino and since 2006 has
organized and promoted events and public initiatives regarding vaccines and health. This
association
   afterwards),was    selected
                  Vaccinare      for three
                              Informati has main    reasons.
                                            been active         First,
                                                            on the      unlike
                                                                    territory wellother
                                                                                    beforeFree-Vax  associations
                                                                                           the reinforcement  of in
Italy  that  tend    to form    specifically to  oppose      a particular    vaccination     or health
   childhood vaccination obligations (Law No. 119/2017). Second, Vaccinare Informati has become a
                                                                                                        policy  (and
arereference
     therefore    likely  to disappear    shortly  afterwards),      Vaccinare     Informati    has  been
              point for vaccine-hesitant families who need support in their vaccination choices in other
                                                                                                           active on
the territory well before the reinforcement of childhood vaccination obligations (Law No.
   regions of the country. Third, given its long history in the promotion of freedom in vaccination
119/2017). Second, Vaccinare Informati has become a reference point for vaccine-hesitant
   decisions in Trentino and its openness to dialogue over the years, Vaccinare Informati has been
families who need support in their vaccination choices (also)                    in other regions of the country.
   recognized as an interlocutor by the provincial political authorities.9
Third,    given its long history in the promotion of freedom in vaccination decisions in Tren-
tino andFor its the study, 21 semi-structured interviews were undertaken with members of the Vaccinare
                 openness    to dialogue over the years, Vaccinare Informati has been recognized as
an interlocutor by theInterviewees,
   Informati association.     provincialover
                                           political
                                               18 yearsauthorities8.
                                                           of age, were identified through snowball sampling

   For the study, 21 semi-structured interviews were
   (Barbour  2014;   Given  2008). The  sample  was   relatively   undertaken
                                                                 balanced   in termswith   members
                                                                                      of gender       of the Vaccin-
                                                                                                and educational
are Informati association. Interviewees, over 18 years of age, were identified through snow-
   level (Tab.  1).
ball sampling (Barbour 2014; Given 2008). The sample was relatively balanced in terms of
gender and Tab.educational      level (Tab.
                 1 – Socio-demographic      1).
                                        characteristics and vaccination choices of Vaccinare Informati members
                                                   (N=21), Trentino (Italy), 2018.


                                           Vaccinare Informati members                               N

                                                           Gender
                                                                                        Female      13
                                                                                           Male      8
                                                                                          Total     21
                                                      Educational level
                                                                               Tertiary (degree)    13
                                                                           Secondary (diploma)       8
                                                                                          Total     21
                                                     Occupational sector
                                                                                        Clerical     7
                                                                                     Education       6
                                                                          Social and Healthcare      3
                                                                           Specialized/technical     3
                                                                                     Blue-collar     2
                                                                                          Total     21




                                                Table
           The study viewed vaccine-hesitant parents as1.a heterogenous group adopting a variety of
                 Socio-demographic characteristics and vaccination choices of
  vaccination choices. The widespread misconception that has characterized public debate and media
                 Vaccinare Informati members (N=21), Trentino (Italy), 2018.
  communication both before and after the onset of the Covid-19 pandemic is that vaccination



  9
     The Autonomous Province of Trento (2016) Vaccinare informati, appello ai consiglieri provinciali, in
  https://www.consiglio.provincia.tn.it/news/giornale-online/Pages/articolo.aspx?uid=178481 (retrieved July 25, 2022); The
  Autonomous Province of Trento (2018) Libera scelta vaccinale: i comitati dai consiglieri provinciali per rilanciare la
  battaglia, in https://www.consiglio.provincia.tn.it/news/giornale-online/Pages/articolo.aspx?uid=179553 (retrieved July 25,
  2022); The Autonomous Province of Trento (2018) L'associazione Vaccinare Informati nuovamente ascoltata dai
  consiglieri https://www.consiglio.provincia.tn.it/news/giornale-online/Pages/articolo.aspx?uid=179555 (retrieved July 25,
Fattorini                                                                                                                84

  The study viewed vaccine-hesitant parents as a heterogenous group adopting a variety of vac-
cination   choices.isThe
       scepticism          widespread
                      constituted          misconception
                                   by a homogenous            that
                                                       front of    has opposed
                                                                people  characterized    public
                                                                                 to vaccines      debate and
                                                                                               – negatively      media
                                                                                                              labelled
communication both before and after the onset of the Covid-19 pandemic is that vaccination
       as  No-Vaxxers.    Contrary   to  this  characterization,  vaccine-hesitant   people   are   a   heterogenous
scepticism   is constituted
       category  with differing by  a homogenous
                                levels                   frontone
                                        of hesitancy towards    of people    opposed
                                                                    or all vaccines.     to vaccines –people
                                                                                     Vaccine-hesitant       negatively
                                                                                                                 may
labelled  as No-Vaxxers.
       decline                Contrary
                certain vaccines            to this
                                   but accept        characterization,
                                                others,                    vaccine-hesitant
                                                         postpone a vaccination    schedule, orpeople
                                                                                                  acceptare    a heter-
                                                                                                           vaccine(s)
ogenouswithcategory   with
            reluctance.      differing
                         Table   2 shows levels of hesitancy
                                           the different        towards
                                                         vaccination       one vaccine-hesitant
                                                                      choices   or all vaccines. parents
                                                                                                   Vaccine-hesitant
                                                                                                             made for
peopletheir
        maychildren,
               declineranging
                         certainfrom
                                   vaccines   but accepttoothers,
                                      partial vaccination            postpone a vaccination schedule, or ac-
                                                              no vaccination.
cept vaccine(s) with reluctance. Table 2 shows the different vaccination choices vaccine-hesitant
parents madeTab. for their  children,
                      2 – Vaccinare      ranging
                                     Informati     fromvaccination
                                               members’    partial vaccination    to no
                                                                     choices (N=21),      vaccination.
                                                                                      Trentino (Italy), 2018.


                                               Vaccinare Informati members                                N

                                                          Vaccination choices
                            All mandatory* vaccines for a child and some vaccines for the other(s)        2
                                      All mandatory* vaccines for a child and none for the other(s)       2
                                                                  Some vaccines for all the children      5
                                               Some vaccines for a child and none for the other(s)        4
                                                                                          No vaccines     8
                                                                                                  Total   21
                                   * All mandatory vaccines before the introduction of Law No. 119/2017



                The study also included the “specialist” view on the Italian vaccine issue with interviews with
                                                                 Table 2.
       five doctors who manage vaccine-hesitant patients. Particularly, these additional semi-structured
                        Vaccinare Informati members’ vaccination choices (N=21),
       interviews were conducted with four paediatricians (one of them is also a clinical researcher) and
                                           Trentino (Italy), 2018.
       another, with a general practitioner endorsing and practicing homeopathy. All the healthcare
       professionals interviewed believed in the importance of childhood vaccination as well as vaccines in
   Thegeneral.
       study However,
               also included  the “specialist”
                        the general               view
                                    practitioner was   on theto Italian
                                                     opposed            vaccine
                                                                the national      issue with
                                                                             vaccination     interviews
                                                                                         mandate and its
with five   doctors
       sanctions    andwhowas have   had more
                               therefore  experience
                                                  alignedwithwith vaccine-hesitant      patients.
                                                                   the Free-Vax positions.      The Particularly,
                                                                                                      limited number   these
                                                                                                                          of
additional semi-structured interviews were conducted with four paediatricians (one of them
       interviews   with  doctors was  due   to the  difficulty of finding physicians   willing to be   interviewed.   This
is alsowas
        a clinical
             due to researcher)     andthemselves
                      fear of exposing   another, with        a general practitioner
                                                       to a controversial   issue that was endorsing      and practicing
                                                                                               much debated      in Italy at
homeopathy.
       the time ofAllthethe healthcare
                         introduction    professionals
                                      of increased           interviewed
                                                      mandatory     vaccinesbelieved
                                                                              (Law No.in     the importance of child-
                                                                                         119/2017).
hood vaccination         as well as
                All interviewees      vaccines
                                   signed         in general.
                                           the informed     consentHowever,
                                                                      form, andthe    general practitioner
                                                                                 all interviews                    was op-
                                                                                                  were audio-recorded,
posedfully
        to the   nationaland
             transcribed,     vaccination    mandate
                                 analysed using            and
                                                   Atlas.ti.     its sanctions
                                                              Qualitative  contentand   was therefore
                                                                                    analysis   (Williamsonmoreet al.aligned
                                                                                                                      2018)
with the
       wasFree-Vax
              performed. positions.   The limited
                            The interviews              number
                                              – conducted            of interviews
                                                                in Italian            with doctors was
                                                                            – were pseudonymized                due tothe
                                                                                                           to protect     the
difficulty   of finding
       interviewees’        physicians
                        privacy           willing excerpts
                                and the interview    to be interviewed.
                                                                were translatedThis
                                                                                  intowas    due to fear of exposing
                                                                                       English.
themselves to a controversial issue that was much debated in Italy at the time of the introduc-
tion of increased mandatory vaccines (Law No. 119/2017).
   All interviewees signed the informed consent form, and all interviews were audio-recorded,
fully transcribed, and analysed using Atlas.ti. Qualitative content analysis (Williamson et al.
2018) was performed. The interviews – conducted in Italian – were pseudonymized to pro-
tect the interviewees’ privacy and the interview excerpts were translated into English.

                                                                                                                       10
85                                                                             Tecnoscienza. 2023. 14(1)

4. “Awareness always has a price”: Making informed vaccination
decisions
   Contrary to a widespread misconception, vaccine-hesitant parents do not lack informa-
tion. Rather, these parents tend to consider trust in political and health institutions as passive,
and that parental assessments and decisions made independently of the wider institutional
context are more responsible and empowering (Hobson-West 2007). Indeed, vaccine-hesi-
tant parents mainly adopt an individualist parenting approach (Reich 2016), investing time
and energy in self-educating “to make informed decisions about their children’s health risks”
(Cassam 2021, 6). These elements clearly emerge from Olivia and Barbara’s words:

     Most of the people I have talked to who have vaccinated [their children] don’t even know
     what they vaccinated [them] for, but this is not, in my opinion, because they are bad par-
     ents – absolutely not. However, I feel like I am more responsible than them because I know.
     Then maybe I am making the wrong choice; however, I have informed myself and I know
     what I am vaccinating for. (Olivia, Vaccinare Informati member)

     And with these parents, talking about the uninformed parents... when you ask them, “But
     what sources of information do you have?” “Ah I have my paediatrician who told me to
     vaccinate, and I vaccinated” or, “My sister works in the medical field and she talked to some
     doctors who said it’s right [to vaccinate]”. And of course, being that we also have to keep
     informing ourselves and trying a little bit to figure it out, these are things that hurt you and
     make you angry because I can understand that a person who has delved into the topic of vac-
     cination and is convinced, has a position that may even be radical. A person who in the end
     has not delved into the issue, who then comes to you and talks to you about uninformed
     [vaccine-hesitant] parents – it is really humiliating. (Barbara, Vaccinare Informati member)

   Vaccine-hesitant parents tend to avoid mainstream media when searching for information
about vaccines. Instead, they privilege their own research undertaken through alternative
channels to the mainstream and the Internet, largely avoiding social media as a source of
information. Television and newspapers are often considered providers of institutional posi-
tions and misinformation and therefore untrustworthy on the subject of vaccines.

     No one questions whether what is said on television is real or whether there is some mis-
     information underneath; it is completely taken at face value. So, with the media, you are
     properly institutionalized to think in a certain way, and those who do not follow [this
     mainstream thinking] and do not buy everything that is said on television are categorized
     as nonconformists, No-Vaxxers, naturalists, in short, are considered to be people who are
     uninformed, who are ignorant, and who believe in Santa Claus, when in fact it is probably
     exactly the opposite. The media manage to do this: newspapers, television mainly… But
     television, in my opinion, is the worst. Television and the Internet are the ones that create as
     much misinformation as possible. (Alessia, Vaccinare Informati member)
Fattorini                                                                                                  86

   When searching for vaccine-related information, vaccine-hesitant parents believe the web
constitutes a more desirable source of information than traditional media. Indeed, the web
is perceived by Vaccinare Informati members as a more “democratic” source of information
from which it is easier to both verify the reliability of the information and delve into topics.

     Rather, we inform ourselves perhaps by reading or choosing news in another way: the In-
     ternet is a bit more democratic, it is true that you can find a little bit of everything, however,
     you can find a plurality of information... and there is much more possibility for in-depth
     study because if I see an article that refers to a scientific journal, with an article published in
     a journal of a certain type, I can actually go and look at the sources. From what I’m told in
     a news report, how do I go and check the sources? (Tiziano, Vaccinare Informati member)

   According to Brown (2008, 273), the Internet has led to the “globalization of medical knowl-
edge” and “to the rise of increasingly clever patient”. Clever patients or “informed patients”
(Kivits 2004) increasingly search for and interpret health information independently, relying on
a variety of health-related information sources. Hence, the Internet can be seen by vaccine-hes-
itant parents as a way to create some “distance from expertise” and at the same time “to enter
into a meaningful dialogue with experts’ authoritative discourse” (Bakardjieva 2010, 175).
   Parents continuously reflect on the most relevant reasons in their vaccination decision-mak-
ing process, i.e., the factors leading to vaccine-hesitant positions (Majid and Ahmad 2020).
The decision to vaccinate does not necessarily imply the absence of vaccine-hesitant attitudes:

     while non-vaccination or single vaccination requires a continued engagement to affirm the
     position taken, even parents who opt for MMR [vaccine] continue to learn and say they
     remain open despite having taken a decision that is irreversible. (Poltorak et al. 2005, 717)

  From a moral point of view, parents may thus feel compelled to become more reflexive about
their own vaccination decision-making processes. When parents have vaccine safety doubts, the
“problem of freedom” arises, i.e., “the problem of the enactment of an ethic of self-conduct, of
personal responsibility, in the realm of vaccine safety” (Kaufman 2010, 12; Rose 1999).

     People [who comply with the law] prefer to look the other way because if they think it
     might harm their child – a certain behaviour, that is – a parental responsibility arises, it’s
     hard to put it on one side… if a doubt crept in here, they would have an obligation to inform
     themselves, they would have to deal with a whole series of things that now are very heavy [to
     handle] such as an exclusion, fine, etc., as well as marginalization because that is also heavy
     [to bear]. (Giulio, Vaccinare Informati member)

   As anticipated by Giulio’s words, non-compliance comes at a cost when vaccination man-
dates introduce sanctions. The consequences of vaccination dissent are generally carefully
considered by vaccine-hesitant parents in their decision-making process. Such parental reflex-
ivity is an attitude particularly visible in Trentino. In this territory, parents who have decid-
ed not to vaccinate their children according to the national vaccination schedule must deal
87                                                                             Tecnoscienza. 2023. 14(1)

with increased sanctions for non-compliance introduced by local authorities (e.g., the service
vouchers suspension) in addition to the fines and exclusion of their children from preschool
services already provided in national law.

     Service vouchers are nothing more than the latest result of a doggedness here in the Province
     of Trento, not Bolzano in that with this legislation, the Province of Trento… could have
     made different choices anyway. Instead, it decided to follow the norm and, in some cases,
     has even made things worse… This a unique case in Italy, a unique case actually for two rea-
     sons: first, service vouchers exist only in Trentino; and second, a unique case in Italy because
     no one in any other region has ever dreamed of making a regulation worse than one that is
     already very tough anyway. (Bruno, Vaccinare Informati member)

  The introduction of additional sanctions for non-compliance in Trentino has further ac-
centuated Vaccinare Informati members’ perception of a discriminating environment and
increased social tensions based on vaccination status.


5. “There is no trust in doctors anymore”: A weakened relationship
between the doctor and the vaccine-hesitant parents
   Vaccine-hesitant parents often have difficulties in openly discussing vaccination with their
general practitioner or paediatrician. As highlighted by Blume (2006, 637), “vaccination may
be voluntary in theory, but that is not how most health professionals treat it in practice” and
vaccine-hesitant parents see the official vaccine-related information as designed to “induce con-
formity” rather than inform. Following the introduction of the Italian law on mandatory child-
hood vaccination in 2017, both the parents and the physicians interviewed perceived a general
loss of trust in the doctor-patient relationship. According to Sara, this relationship is perceived
as paternalistic, a relationship in which unilateral communication does not allow dialogue.

     There is no trust in doctors anymore… Then “you have to do this because that’s just the way
     it is”; it doesn’t work. (Sara, Vaccinare Informati member)

   When seeking vaccine-related information, vaccine-hesitant parents often choose not to
consult their children’s physician because they think that an open, non-judgmental, discus-
sion on the issue is not possible (Evans et al. 2001; Leach and Fairhead 2007; Yaqub et al.
2014). When scientific consensus over vaccines does not create trust, vaccine-hesitant par-
ents “are ridiculed for raising concerns, questioning expert testimony, and taking seriously
minority dissenting opinion” (Goldenberg 2021, 128). For example, Sara and Oriana’s con-
cerns – based on their children’s health vulnerabilities – were not taken seriously or addressed
properly by healthcare providers.

     So many times, when I was summoned [for a doctor’s appointment] for the children, to
     know why I was not getting the vaccines, I told them about my particular situation and
Fattorini                                                                                                88

     family history, and they didn’t give me any answers and just laughed. Or they were joking
     about it. And honestly, this to me is an inhumane thing because I told them, “For you,
     it can be just one who can have an adverse reaction, for me that one is my whole life”.
     (Sara, Vaccinare Informati member)

     At the time of the birth of the second child, there was clearly a strong fear about facing
     [the same situation experienced with the first child] because there is certainly a genetic al-
     lergic predisposition with the first child and the second child was also born tending to be
     allergic – so, triggering or aggravating this problem was my primary concern. I said if there
     are already difficulties, you are going to stimulate or burden a two-month-old child, and
     you don’t know what they are allergic to. Even a small amount of a substance is enough [to
     cause a vaccine adverse reaction]. Clearly, I felt responsible at that moment there. Since I had
     listened faithfully before to what they [paediatricians] advised, at this point I said let’s stop
     for a moment and evaluate. (Oriana, Vaccinare Informati member)

  Some of the interviewed doctors also perceived an increased tension in their relationship with
parents because of Law No. 119/2017. Specifically, the reinforcement of childhood vaccination
mandates has contributed to making the relationship of trust more fragile and difficult to build
over time – especially with those parents more sensitive to the issue of vaccine adverse events.

     And to me, yes I would love to see the vaccine requirement removed, but as a paediatrician,
     so that we can give ourselves [as doctors] a chance to get back to grounding our relationship
     in trust and bringing parents to a choice that is informed. And these requirements have not
     favoured us in that. (Maddalena, paediatrician)

   Accordingly, some parents interviewed believe that, in part, this deterioration in the doctor-pa-
tient relationship has been exacerbated precisely by the law. Particularly highlighted by Elisa’s
words, there is a belief that most doctors have lost their professionalism because they have been
forced to align with the law for fear of being disbarred by the National Medical Association9.

     It [vaccination] should be a free choice made with your doctor, but doctors are deprived
     of their professionalism, they can no longer decide, they are afraid because they have seen
     that they have applied the fascist method of hitting one to punish a hundred. So, they [the
     authorities] hit some very prominent, very good doctors who have given their lives for pa-
     tients… It’s not that they don’t want to, most can’t. And so, we hope that it changes and
     that the doctor regains his/her professionalism and his/her way of acting in science and
     conscience. (Elisa, Vaccinare Informati member)

  The deterioration of the doctor-patient relationship was perceived by interviewees also in
the local vaccination hubs: pre-vaccination appointments seemed to be conducted “with the
stopwatch in hand”, and medical staff seemed unwilling to dialogue with parents to answer
their questions. Indeed, many healthcare providers report difficulties in communicating with
vaccine-hesitant parents, consultations that they perceive as unproductive (Wilson et al. 2020).
89                                                                             Tecnoscienza. 2023. 14(1)

However, the great organizational strain on medical staff due to the new procedures and time-
lines required by Law No. 119/2017 was clearly acknowledged. This pressure on Italian health-
care workers, already overburdened by broader issues of personnel shortage in the healthcare
field, was recognized not only by the doctors interviewed but also by Vaccinare Informati parents.

     I’ve seen five children come in and out in the space of five minutes and one behind the other
     just in a continuous stream. So certainly, there is also work stress in the vaccination centres.
     (Davide, Vaccinare Informati member)

     Then, in my opinion, the problem of our health care organization is that the paediatrician
     of free choice or the general practitioner has about 5,000 patients in the queue and cannot
     devote the right amount of time to those who are there… That’s the big problem… and
     unfortunately people think that the doctor or the professional did not really listen to what
     they needed and so they tend to go in other directions. (Zoe, paediatrician)

   The introduction of Law No. 119/2017 was followed by a general change in the approach
to vaccination. According to Vaccinare Informati parents, this has been a step backwards
eliminating dialogue between parents, healthcare providers, and local authorities, that had
been built over the years in Trentino.

     Both at the level of the Trentino Health Department and at the level of doctors who are
     part of the health care system, the stance taken is completely obtuse, and was different just a
     few years ago. It seems strange to me that in 2006 there was [...] a general tendency towards
     greater responsibility: it was seen as progress to have this freedom to choose and now, sud-
     denly, everyone has had to or has chosen to change perspective and return to an approach of
     twenty-thirty years ago. (Tiziano, Vaccinare Informati member)

   Furthermore, the doctors interviewed highlighted communication issues between local
health institutions and parents, especially at those institutional events organized to commu-
nicate the changes introduced by Law No. 119/2017. According to the paediatricians Madd-
alena and Giorgia, during those events, instead of dialogue, there was a stand-off between cit-
izens and authorities. Rather than addressing parents’ concerns, a top-down communication
of general vaccine-related information was delivered by the authorities.

     At those events, they asked us [paediatricians] to go too, now I wouldn’t know how to solve
     [the vaccine issue], but I realized that there is no dialogue: it’s like two bulls clashing into
     each other. (Maddalena, paediatrician)

     There was a stand-off there because whoever organized the meeting said what they had to
     say, they linearly said what they had to say and stopped… A lot of time was wasted in this
     communication talking about what disease it is, what happens with that disease, what the
     vaccine is like, etc... People didn’t need to know these things or hear them repeated, people
     are there to understand. (Giorgia, paediatrician)
Fattorini                                                                                               90

   As highlighted by Gottlieb (2016, 158) “[vaccination] advocates focus on the popula-
tion-level value of universal vaccination and critiquing fallacious claims about vaccine dan-
gers”. However, the fact that vaccine safety has already been demonstrated from a public
health point of view is not sufficient to convince vaccine-hesitant parents to embrace the na-
tional vaccination schedule: parents are instead concerned to know whether vaccines are safe
for their own children, based on their health history, in line with a particularistic perspective
of children’s health (Leach and Fairhead 2007).
   In deciding whether to vaccinate their children and, eventually, against which disease(s),
Vaccinare Informati parents first evaluate the likelihood their child will get a vaccine-prevent-
able disease (VPD) and the likely impact of the VPD on that child. Furthermore, other rele-
vant elements that vaccine-hesitant parents take into consideration in their vaccination deci-
sion-making process are the specific context in which they live, as well as their lifestyle. Rather
than being a priori opposed to vaccines, vaccine-hesitant parents often ask for an alternative
and personalized vaccination schedule; e.g., they may request a delay between vaccine inoc-
ulations or the use of monovalent vaccines instead of combined ones (Dempsey et al. 2011).

     So, we have allowed ourselves to make this kind of choice, which is not necessarily every-
     one’s choice or the one that has to be standardized for everyone. Just as in our opinion the
     preventive vaccine plan does not have to be standardized, neither does the non-vaccine plan.
     Because these are choices that have to be made with some awareness and by evaluating the
     whole picture: if a family has the opportunity to live with a particular [healthy] lifestyle,
     then they can choose to go with a certain [vaccination] approach; in other contexts the risk
     is different, and it all has to be evaluated differently. (Manuel, Vaccinare Informati member)

     Do you make them [vaccines] mandatory? All right, I may be okay with that, but we ad-
     minister them in a way that I think is suitable [for her children] because it doesn’t change [if
     vaccines are inoculated in monovalent doses rather than combined ones]… The child then
     eventually turns out immunized, whether I gave him a six-in-one shot or whether I gave him
     six detached shots eh… So let me do it [monovalent vaccine] because I was able to do it until
     a year ago. (Noemi, Vaccinare Informati member)

   As highlighted by Cairns et al. (2013, 1550), when trust in health authorities and their rep-
resentatives decreases, it “undermines public perceptions regarding their legitimacy to lead
public health strategy and policy”. Specifically, vaccine-hesitant parents often perceive both
the attitudes of healthcare providers and most of the scientific literature available on vaccines
as particularly dissatisfying – especially when their vaccine-related concerns are not adequate-
ly addressed by scientific experts. In this context, vaccine-hesitant parents might adopt alter-
native medical practices or information sources (Goldenberg 2021; Peretti-Watel et al. 2015).
91                                                                             Tecnoscienza. 2023. 14(1)

6. “Who is this scientific community?”: Vaccine-hesitant parents’
perception of science and scientific experts
   Among the most relevant issues that emerged during the interviews with Vaccinare Infor-
mati parents are those of the perception of the role of science in society and of the relation-
ship between the scientific community and citizens. In line with other research on this topic
(Askvall et al. 2021; Lazarus et al. 2020), this paper has found that respondents do not distrust
science. On the contrary, science is perceived as an important resource for society. Indeed,
vaccine-hesitant parents emphasise that science does not work on its own; it is both managed
by and a part of society. This is in line with a broader shift of focus from “science and society”
to “science in society” (Bucchi and Trench 2021): in contemporary societies, the integration
between these two spheres has increased to the point that “the development of present society
cannot be conceived without the development of science and technology” (Schiele 2021,53).

     I don’t have a negative opinion of science [...], but science itself is an instrument of society
     and it is society that administers it; so it is society that gives meaning to what science says.
     (Barbara, Vaccinare Informati member)

   The vaccine issue in the public debate has been characterized by a polarization of positions
between science and experts on the one side and “anti-vaccine” and non-expert citizens on the
other. As highlighted by Brunson and Sobo (2017, 46) “polarization feeds on itself, further
strengthening the perception of a divide”. According to Vaccinare Informati parents, this
represents a clear attempt by part of the scientific community to recreate an “ivory tower”,
keeping a distance between what is considered scientific and what is not, and imposing an
ipse dixit approach. The perceived separation between specialists and non-specialists arising
from the adoption of a technocratic approach to science communication is especially evident
around the issue of vaccines. In contemporary societies, however, the public rarely accepts
technologies and innovations uncritically – both experts and non-experts want to, and have
the right to, open and probe what Latour (1998) has referred to as “black boxes”. Several
authors (Callon 1999; Davison et al. 1991; Epstein 1995; Pols 2014) have focused on the role
of “lay knowledge” – the counterpart to scientific or “expert” knowledge – in shaping and
challenging scientific expertise, especially in health issues. According to Horlick-Jones (2004,
11), these are changes that “are taking place in the very production of knowledge”.

     Science arrogates and perches within a fortress of “I know and you know nothing”, the
     distance from the population increases… When medicine, which is not a science but a prac-
     tice based on scientific knowledge, tries to entrench itself inside a fortress made of “I know
     and you don’t”, it moves away from its own field of application, and therefore its destiny is
     certainly not a prosperous one. (Manuel, Vaccinare Informati member)

  The parents interviewed for this study believe that science, as well as society, is divided on
the vaccine issue: according to them, even within the scientific community, there are different
factions that do not allow the issue to be addressed with the seriousness it deserves. According
Fattorini                                                                                                     92

to those interviewed, a large part of the community of scientific experts – mainly those who
have been publicly visible in the media – have displayed arrogant attitudes toward citizens.

     So, in the last two years, I’ve noticed a difference in the approach [of scientific experts] with peo-
     ple: “you haven’t studied, stop, you don’t know anything, enough, I’m in charge”. From my point
     of view, this is called dictatorship, it’s not called science. (Sara, Vaccinare Informati member)

   Contemporary societies are described by Beck (1992) as “risk societies” in which people
mainly face risks produced by industry and science – i.e., “manufactured risks”. In this con-
text, the main cultural focus on risk undermines conventional definitions of expertise: even
if expertise might be considered authoritative and objective, “the nature of risk tends to un-
dercut claims made about its authoritative understanding” (Horlick-Jones 2004, 110). As
highlighted by Callon (1999), the core of the issue concerns the broader forced separation
between science (specialists) and society (non-specialists). The concept of “expert” and what
is considered “expert knowledge” are conventions that can change depending on the socio-cul-
tural context. Thus, merely recognizing a role for expert knowledge does not oblige people
to accept “the immaculate conception of expertise” (Turner 2001, 146). This is in line with
the phenomenon of the “secularisation of the public image of science” (Bucchi and Neresini
2006, 39) whereby, while recognizing the usefulness and importance of science, people no
longer accord it a special, quasi-sacred status. Vaccinare Informati parents perceive science
as dogmatic and that it privileges mainstream scientific positions. They believe that science
should be based on doubt(s), continuous research, and a plurality of positions, and they stress
“the particularity and partiality of ‘science’” (Leach and Fairhead 2007, 24).

     I believe that at the scientific community level, of published research, there is a plural-
     ity of ideas. The problem is that this plurality is denied at the level of communication.
     (Barbara, Vaccinare Informati member)

     Inevitably three-quarters of the time a study comes along later that says the opposite of what
     was said in a previous study. And on this, I challenge people of science to say that this is not
     true. To pass science off as dogma is the death of science: science is not dogma, it is doubt
     and trying to figure out whether that doubt is true or not in order to take a step forward...
     And this is missing in the discussion of science, in my opinion, there is only verbal aggres-
     sion against those who are not aligned. (Davide, Vaccinare Informati member)

   The interviews conducted highlight that the contemporary problem “is not mistrust in sci-
entists but, rather, a problem in deciding who the scientific experts really are” and, consequent-
ly, which expert can be trusted (Shapin 2004, 46). Indeed, parents and a doctor raised several
doubts regarding the identification of the scientific community, and those who are part of it.

     On television and in the media there are references to this scientific community and no one
     until now has been able to define its component parts. That is, who is this scientific commu-
     nity?... Who are they [its constituents]? (Bruno, Vaccinare Informati member)
93                                                                              Tecnoscienza. 2023. 14(1)

     They [mainstream scientific experts] think they have science behind them, but this science,
     this weird halo, who is it? I have scientific publications in international journals, I have many
     [academic] titles; however, I say, “I don’t think the vaccine is the right thing”. “Ah, [but]
     that’s not scientific…”. So, what the scientific community lacks is not the competence or
     the medical knowledge, but the commitment to criticism and self-criticism: they take for
     granted that they are the depositaries of scientific knowledge. (Paolo, general practitioner)

   When science is recognized as having epistemic authority – i.e., a source on which people can
rely to acquire knowledge – on a topic such as vaccination, it “may override all else” and signif-
icantly influence people’s attitudes and behaviours on that topic (Kruglanski et al. 2005, 352).
Furthermore, as highlighted by Suldovsky (2016, 420), “when science is selected or assumed as
the epistemic authority… the deficit model is sure to follow”, thus leading to top-down and uni-
directional communication from “an epistemic authority (scientists) to a knowledge-deficient
audience”. However, it should be noted that people can trust science – its methods and prin-
ciples – but not its institutions and their representatives (Bory et al. 2022; Huber et al. 2019).
This is a matter of epistemic trust (Goldenberg 2021), i.e., trusting a person or an institution
as a source of knowledge. This implies an epistemic dependence of trustors on the trustee’s
goodwill, thus exposing the former to the risk of being deceived or damaged (Wilholt 2013).
Therefore, as in the case of vaccine, it is not straightforward to trust scientific experts when
their actions and opinions can have a direct impact on people’s own health (Crease 2004). Fur-
ther, much of citizens’ understanding of vaccinations is based on epistemic trust and having no
or low trust in experts and their institutions can lead to vaccine hesitancy (Goldenberg 2021).
   Public debates on scientific topics, such as vaccinations, often raise social, moral, and regu-
latory issues that go beyond scientifically based solutions (Scheufele 2013). Furthermore, due
to the communication strategies of mass media (Bucchi 2000), the debate on vaccinations is
often politically oriented rather than purely scientific. Indeed, despite vaccines often being
portrayed as an incontrovertible and neutral public good, they are instead tied up with (bio)
politics, “with struggles over status, authority and value” (Leach and Fairhead 2007, 2). The
interplay and at times overwhelming plurality of quasi-scientific interests – largely driven by
political and economic concerns – within the scientific community is one of the main con-
cerns among the interviewees. According to Leonardo, this interpenetration of interests has
privileged mainstream scientific literature in favour of vaccines, a unidirectional approach
further entrenched by the lack of public funds allocated to vaccine-related research.

     For sure, what I’ve seen in recent years is that, unfortunately, what dominates in this so-called
     scientific environment is not the so-called science because… unfortunately for many many
     years now, scientific research is funded almost exclusively by private interests – pharmaceu-
     tical companies in this case, or even by others… This means that over many years, a body of
     studies and scientific work in favour of vaccines has built up that is almost unbeatable, let’s
     say, that is going in one direction. While before, when there was a little freedom and public
     funding, there were studies in both directions. (Leonardo, Vaccinare Informati member)
Fattorini                                                                                          94

  The role of the government in the vaccine issue – that should be that of “a desired regulator
of the industry and protector of citizens” (Numerato et al. 2019, 92) – is often perceived by
vaccine-hesitant citizens as piloted by pharmaceutical industries. Furthermore, the complex
– and sometimes non-transparent – links between science, politics, and private organizations
can increase the perception that scientists (as well as political and economic actors) are fa-
vouring their own interests at citizens’ expense (Goldenberg 2021; Ivani and Dutilh Novaes
2022). In this regard, Vaccinare Informati members believe that there is a lack of transparency
in the scientific field and that science is as corruptible as the political sphere.

     There is a structural problem... that is given by the fact that scientific research is not
     done in a linear and clear way and, as you might think, that a researcher stands there and
     says, “Now I’ll do an experiment and let’s see where it takes me”. They [the studies] start
     largely from the funding that is given and those who have the money are the big groups.
     (Tiziano, Vaccinare Informati member)

   Today, science is perceived as both positive and “uncertain, sometimes irresponsible and
above all bearer of particular interests” (Bucchi and Neresini 2006, 40). The increasing im-
portance of the conflicts of interest issue is a feature that characterizes contemporary societies
(Beck 1992). The issues raised cannot be merely reduced to an anti-science stance: critics of
unethical pharmaceutical company practices – such as obscuring data or non-publication of
negative results, as well as their influence on the medical and political sector, have been re-
ported on in the literature (Angell 2005; Gøtzsche 2013; Sismondo 2018). Furthermore, the
strong presence of economic and political interests in guiding scientific research is part of the
broader scientific debate on “research integrity” (Ampollini 2018)10. Scientific institutions
and their representatives cannot simply assume that “they should be trusted; instead, trust
must be earned and maintained” (Goldenberg 2021, 170). When institutions and their rep-
resentatives insist on promoting the narrative of a value-free science, scientific expertise and
authority can be compromised rather than legitimized (Kitcher 2011a, 2011b; Latour 2015).


7. Discussion

   This paper has presented qualitative data collected during an exploratory case study con-
ducted in Trentino (Italy) on a group of organized vaccine-hesitant parents in 2018. Particu-
larly, the paper focused on vaccine-hesitant parents’ perception of the science and society
relationship following the enforcement of Italian childhood vaccination mandates (Law No.
119/2017). The new childhood vaccination requirements have impacted those who do not
comply with the mandates, especially vaccine-hesitant families in Trentino, where local au-
thorities have adopted a more intransigent approach to non-compliance, increasing the sanc-
tions already provided in national law. The study integrated the perspectives of vaccine-hesi-
tant parents with the perceptions of a group of physicians on the introduction of mandatory
vaccination and its implications for the doctor-patient relationship.
95                                                                       Tecnoscienza. 2023. 14(1)

   The analysis of Trentino’s case study highlighted four main issues. First, vaccine-hesitant
parents’ relationships with (health and political) institutions and scientific experts have de-
teriorated due to the (total or partial) absence of an open and constructive dialogue. Particu-
larly, trust and communication challenges increased following the introduction of Law No.
119/2017. Such deterioration is also evident in doctor-patient relationships. Indeed, according
to both the parents and physicians interviewed, mandatory vaccination and its sanctions have
further eroded the dialogue that had been built over the years between vaccine-hesitant parents
and paediatricians. Since the introduction of the law, Vaccinare Informati parents perceived
a change in their relationship with healthcare professionals when addressing the vaccine is-
sue, a relationship now guided by paternalistic and unilateral communication. However, vac-
cine-hesitant attitudes emphasize “legitimate doubts and concerns about vaccines” (Dubé et
al. 2021, 177), which should be recognized as such. These doubts and concerns should be
carefully considered not only by healthcare professionals but also in the design of public health
interventions. This implies a change in perspective that might allow vaccine-hesitant parents
to be recognized as “exemplars of medically engaged patients, even if not necessarily compliant
ones” (Gottlieb 2016, 160). Rather than being guided by ignorance and lack of education, vac-
cine-hesitant parents are continuously searching for information and questioning scientific ex-
perts and how vaccine safety is promoted. In line with Carrion’s (2018, 320-321) research, the
vaccine-hesitant parents interviewed in the case study are experiencing the “paradox of patient
advocacy”: even if the “critiques of the social and political practice of science also reflect dom-
inant critical and postmodern perspectives” and are generally recognized as valuable in other
health contexts, vaccine-hesitant parents’ advocacy is often harshly criticized and marginalized.
   The second issue highlighted by the case study is the contrast between compulsory vacci-
nation on the one hand and parents’ demands for freedom of choice and exemptions on the
other. This contrast is not based on divergent values: it stems from a different interpretation
of the same value (Zuolo 2013) – i.e., a different perception of what guides and should guide
individual and collective health practices. Vaccine-hesitant parents are particularly concerned
about monitoring their children’s health and adopting health-related practices – including
vaccination – that are highly personalized. This approach is in line with the broader shift to-
ward increased personalization of medical care. Within this perspective, vaccine-hesitant par-
ents should be recognized as engaged and reflexive patients (Numerato et al. 2019), rather than
problematic and disregarded interlocutors. This implies the need for a critical examination of
the standard definition of a “good patient” as the one who complies without questioning sci-
entific expertise (Gottlieb 2016, 160). However, vaccination campaigns that support the intro-
duction of vaccination mandates are often based on the assumption that compliance is the sin-
gle correct public response to health communication strategies. This implies a loss in the variety
of public responses (Manyweathers et al. 2020). It also implies that those patients that are not
fully compliant will either be ignored or easily misinterpreted (Davis et al. 2015). By rejecting
or deriding vaccine-hesitant parents’ concerns, the media, and other key actors – such as policy-
makers, scientists, and healthcare professionals – have often contributed to fuelling the vaccine
hesitancy phenomenon (Goldenberg 2021; Ivani and Dutilh Novaes 2022; Navin 2015).
   Third, the case study results show that vaccine-hesitant parents interviewed trust science
and the scientific method. However, what is contested by these parents is the authority of
Fattorini                                                                                           96

scientific experts – especially those who were visible in mainstream media – and their insti-
tutions. On the vaccine issue, Vaccinare Informati’s members believe that the scientific com-
munity lacks transparency regarding its members, existing conflicts of interests (political and
economic), and research integrity issues. Furthermore, according to these vaccine-hesitant
parents, the scientific community is detached from society, and this is further exacerbated
due to a dogmatic top-down communication that does not allow dissent. Several authors
(Fischhoff 2012; van der Bles et al. 2020) highlight that, usually, scientific experts – especially
those advising public policymakers (Moore and Mackenzie 2020) – do not publicly commu-
nicate the uncertainty related to their findings. Indeed, the underlying assumption is that
scientific experts need to provide certainties to the public to maintain authority and credibil-
ity. On the contrary, “this lack of transparency could potentially compromise important de-
cisions people make based on scientific or statistical evidence” (van der Bles et al. 2020, 7672)
– including vaccine-related decisions. The case study shows there is still a long way to go for
science, scientists, and healthcare professionals to get closer to vaccine-hesitant citizens. As
highlighted by several authors (Brunk 2006; Goldenberg 2021; Wynne 2006), citizens’ oppo-
sition to science-based policy is often explained following the deficit model approach. Indeed,
policymakers, healthcare practitioners, and scientists often see citizens as passive knowledge
recipients rather than “exchange partners” whose opinions and concerns deserve to be consid-
ered (Goldenberg 2021; Ivani and Dutilh Novaes 2022, 54). Hence, there is still a need for a:

     shift to a model of knowledge co-production in which non-experts and their local knowl-
     edge can be conceived as neither an obstacle to be overcome… nor an additional element
     that simply enriches professionals’ expertise… but rather as essential for the production of
     knowledge itself. (Bucchi 2008, 68).

  Fourth, this case study highlights the need for an improvement in the dialogue between
institutions and vaccine-hesitant parents’ associations. As Ceva (2013, 71) points out, one
of the priority challenges facing democracies is the “reconciliation of minority instances of
dissent”. In contemporary societies, highly complex issues – such as those involving vaccines
– are increasingly evident, challenging the current forms of political decision-making and
democratic representation as well as how expertise is understood and defined. Political, health
and scientific institutions should maintain an open dialogue with vaccine-hesitant parents
and, especially, with the associations that represent them. Indeed, through their members,
these associations can reach all those individuals who have doubts about vaccines and/or vac-
cination policies either directly or indirectly, offering different types of support to the vaccine
hesitant. Involving these associations in the institutional discussions is important to fully rec-
ognize, understand, and try to address the doubts and concerns of vaccine-hesitant citizens.
Involving citizens – or the associations that represent them – regardless of their positions on
the vaccine issue could mitigate the social divisions currently exacerbated by a dualistic and
simplistic division of the vaccine debate. When dealing with the vaccine hesitancy issue, insti-
tutions need a science communication strategy that is capable of going beyond paternalistic
reassurances about the safety of vaccines and can consider the heterogeneity of attitudes that
constitute the vaccine hesitancy and the relevance of alternative (parental) expertise.
97                                                                                  Tecnoscienza. 2023. 14(1)

Notes
  1
     www.who.int/news-room/feature-stories/ten-threats-to-global-health-in-2019.
   2 The WHO (2019, 2) defines an adverse event following immunization (AEFI) as “any untoward
medical occurrence, which follows immunization and which does not necessarily have a causal relation-
ship with the use of the vaccine. The adverse event may be any unfavourable or unintended sign, an
abnormal laboratory finding, a symptom or a disease”.
   3
     Law No. 119 of 31 July 2017, published in the Official Gazette No. 182 of 5 August 2017. This regulatory in-
tervention is part of a broader national plan – National Plan for Vaccine Prevention 2017-2019 – and international
strategy – i.e., the Global Plan for Vaccination 2011-2020 and the European Vaccination Action Plan 2015-2020.
   4
     Mandatory vaccines from the 1960s to the 1990s: anti-diphtheria, anti-tetanus, anti-polio, anti-hepatitis B.
   5
     Mandatory vaccines starting from 2017 (in addition to those required prior to 2017): anti-measles,
anti-rubella, anti-pertussis, anti-mumps, anti-varicella, anti- aemophilus in uen ae B.
   6 Resolution of the Provincial Council of Trento no. 322 of 2 March 2018.
   7 Resolution of the Provincial Council of Trento no. 547 of 9 April 2018.
   8 The Autonomous Province of Trento (2016) Vaccinare informati, appello ai consiglieri provin-
ciali. Available at: https://www.consiglio.provincia.tn.it/news/giornale-online/Pages/articolo.aspx-
?uid=178481 (retrieved July 25, 2022); The Autonomous Province of Trento (2018) Libera scelta vac-
cinale: i comitati dai consiglieri provinciali per rilanciare la battaglia. Available at: https://www.con-
siglio.provincia.tn.it/news/giornale-online/Pages/articolo.aspx?uid=179553 (retrieved July 25, 2022);
The Autonomous Province of Trento (2018) associa ione accinare Informati nuovamente ascoltata
dai consiglieri. Available at: https://www.consiglio.provincia.tn.it/news/giornale-online/Pages/artico-
lo.aspx?uid=179555 (retrieved July 25, 2022).
   9
     Federazione Nazionale degli Ordini dei Medici Chirurghi e degli Odontoiatri (FNOMCeO).
   10
      Research Integrity refers to research characterized not only by the sharing of common working prin-
ciples and by the presence of virtuous and positive ethical attitudes – on the part of those who conduct,
evaluate and fund research – but also free of misconduct (such as plagiarism and falsification of data).



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