Díaz-Pérez et al. BMC Medical Ethics          (2020) 21:122 
https://doi.org/10.1186/s12910-020-00540-z
RESEARCH ARTICLE Open Access
Moral structuring of children during the
process of obtaining informed consent in
clinical and research settings
Anderson Díaz-Pérez1,2* , Elkin Navarro Quiroz3 and Dilia Esther Aparicio Marenco2
Abstract
Background: Informed consent is an important factor in a child’s moral structure from which different types of
doctor–patient relationships arise. Children’s autonomy is currently under discussion in terms of their decent
treatment, beyond what doctors and researchers perceive. To describe the influential practices that exist among
clinicians and researchers toward children with chronic diseases during the process of obtaining informed consent.
Methods: This was a cross-sectional, qualitative study via a subjective and interpretivist approach. The study was
performed by conducting semi-structured interviews of 21 clinicians and researchers. Data analysis was performed
using the SPSS version 21® and Atlas Ti version 7.0® programs.
Results: The deliberative and paternalistic models were influential practices in the physician–patient relationship. In
the deliberative model, the child is expected to have a moral awareness of their care. The paternalistic model
determined that submission was a way of structuring the child because he or she is considered to be a subject of
extreme care.
Conclusions: The differentiated objectification [educational] process recognizes the internal and external elements
of the child. Informed consent proved to be an appropriate means for strengthening moral and structuring the
child.
Keywords: Autonomy, Paternalism, Doctor–patient relationship, Consent, Informed consent in minors, Capacity,
Children, Understanding, Moral, Practices, Pediatrics, Clinical, Investigator, Biomedical
Background This investigation sought to identify the dynamics in-
Informed consent is the communication process wherein volved when requesting informed consent because it
the child (boy, girl, or adolescent) is informed of aspects aims to understand the tensions that may occur between
related to their illness or the importance of their participa- the researcher or clinician and the mature child with
tion in a study. In countries such as Colombia and Spain, autoimmunity and their family, since it is the latter who
clinicians and researchers (C&R) are legally required to in- directly provide their approval by means of the so-called
form and obtain a child’s consent unless they have been informed consent, by substitution or by representation.
proven to be mentally incapable of providing it. Studies such as the one proposed by Royo, Prado, and
Maíllo (2012) indicate that in order for the physician or
* Correspondence: ander2711@gmail.com researcher to consider that the moral elements have
1Department of Social and Human Sciences, Simón Bolívar University, been achieved in the minor, there must be an initiative
Barranquilla, Colombia
2Corporación Universitaria Rafael Núñez, Faculty Of Health sciences, to promote the development of their sense of utility,
Cartagena de Indias, Colombia moral capacity, and sense of belonging to something [1].
Full list of author information is available at the end of the article
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Díaz-Pérez et al. BMC Medical Ethics          (2020) 21:122 Page 2 of 10
It is important to analyze this from a specific sociocul- Likewise, López states that C&R should recognize minors
tural context, such as the Colombian context, from its as moral subjects only in their particular and unique
representations in the physician or researcher’s percep- evaluative aspects and very slightly from a normative and
tion or meanings regarding the minor’s moral develop- universal outset. In other words, they should recognize
ment since several influential practices are produced. them as subjects with a universal right but not beyond the
These are specifically physician–patient relationships developmental stage that they have reached [8].
that depend on the respect or violation of the minor’s Elements of dominance emerge as influential practices
rights within the framework of the principles of from the way C&R perceive children’s autonomy or their
bioethics. moral development; these are manifested in the phys-
Investigations that describe the dilemmas faced by re- ician–patient relationship during the process of obtain-
searchers and doctors associated with obtaining informed ing informed consent. Accordingly, Sánchez Vázquez
consent from mature minors, to which they are obliged by proposed a classification system that illustrates the type
law, do not emphasize or report the (imaginary) meanings of physician–patient power relationships that emerges
regarding the minor’s autonomy and responsibility. from an applied ethics perspective. This could explain
Research in this field has shown that it has not been easy the dynamics of informed consent, including paternal-
to clearly and precisely determine when humans begin to moral, normative-legal and differential type relationships
be autonomous subjects and legally responsible for their [10]. Influential relationships respond to different logics
actions. In this aspect, authors such as Gutiérrez et al. when addressing the ethical problem surrounding the
state that consent is a process by which children are pro- figure of the child; for example, the paternal-moral rela-
vided basic information about an investigation provided tionship conceives the child as only a “social being,”
they demonstrate “… the ability to express preferences which is the object of care. The normative-legal relation-
and understand the nature and purpose of the research ship introduces the universal dimension brought about
techniques.” [2]. by the human rights phenomenon, in which the child is
In this order of ideas, Freeman states that children’s already treated as a dignified being with full rights. Fi-
rights are very important, and therefore, they must be nally, the differential relationship considers the child’s
treated equally and even as autonomous beings [3], with particular and unique perspective, highlighting the con-
the child’s “best interests” in mind, which may be gained stant alternation of each child between autonomy and
through the means of consent [4]. Thus, developing a subjective vulnerability [10].
child’s autonomy is as important as developing that of In summary, the different types of physician–patient
any other person, regardless of what stage of develop- relationships help us reflect on a child’s autonomy and
ment they are in. Conversely, Sayoux and Frometa state formulate moral structuring guidelines (educative) for
that research related to children’s autonomy is limited to each type of patient. It should be mentioned that current
a historical and philosophical description of the need to guidelines do not clearly describe when to request a
consider the parents in decision-making, beginning with child’s consent for research, especially when they show a
informed consent, wherein the child is a secondary sub- capacity for understanding [11]. Several studies describe
ject who is not considered capable of decision-making the minimum requirements of health personnel when
[5]. The family plays an important role in the interaction children are placed in their care. Their needs should be
of complex networks in the parent–child relationship, considered when they are needed to provide consent
which is reflected in the child’s dependence and vulner- without coercion, and they need to be called by their
ability and their decision-making capability [6]. name, among other things that define the axiological,
However, studies such as those conducted by Manson teleological, and deontological elements [12, 13], which
(2015) and Tucker (2016) refer to the need to implement contributes to the child’s moral strengthening. Thus, au-
a transitional paternalism where it is not the child’s tonomy interpreted as the child’s moral maturity could
competence that is evoked but their flexibility, which depend on how they assume their self-care practices and
leads to the normative power to morally structure the even recognize the importance of accepting their partici-
child to take responsibility for their decisions to an ad- pation in an investigation [14]. These elements could
missible extent. More specifically, C&R should prefer the lead to the C&R treating the child as a moral subject
fair methods, which give greater respect to the child’s worthy of respect, with agency or self-government cap-
decisions, rather than the symmetrical alternative of acity [7, 9, 15], which is demonstrated by their self-care
whether to consent [6, 7]. practices [13]. Conversely, according to an analysis of
C&R should be aware that childhood is a stage in practices adapted to international standards for research
which the child develops a basic dependence on others in children, it also helps to examine the possible di-
[8]; therefore, transitional paternalism appeals to an indi- lemmas and tensions raised regarding a child’s autono-
vidual’s obligations to help others self-govern [7, 9]. mous capacity, which are constantly evolving from a
Díaz-Pérez et al. BMC Medical Ethics          (2020) 21:122 Page 3 of 10
particular social and historical context [2, 5, 8, 13]. In informed consent could be obtained more for adminis-
Colombia, as in other Latin American countries, it is trative reasons than for reasons owing to moral duty
considered a moral duty to evaluate the autonomy of the [13]. López mentions that C&R should consider the
minor within the informed consent process, regardless evaluation of the child’s moral development based on
of their age, especially if they exceed 12 years, which the articles of the United Nations Children’s Fund,
have demonstrated degrees of communication and un- which address the participation of children in research
derstanding with the ability to make limited decisions. [9, 20–22]. Article 12 states that “Children who can es-
Informed consent merges influential practices of a de- tablish their own opinions should have the right to ex-
liberative or submissive type. Thus, as Powell and Bu- press them and have them taken into account.” Article
chanan expressed: “It is a complex construct where 13 states that “Children are free to not participate and
particular values and beliefs influence the way of con- should not be pressured.” Therefore, “participation is a
ducting research’ and thus perceiving the ‘other’.” [16] right, not an obligation.” [8] Ultimately, the child’s deci-
Undoubtedly, it is imperative to understand that beyond sion is a subjective fact for C&R, and therefore, it should
the principles of beneficence, justice, and respect as nor- be interpreted according to the framework of bioethical
mative elements, the sociocultural aspects of children principles, in which the principle of beneficence prevails
and their families must be considered; otherwise, it may over the principle of autonomy without prior evaluation.
lead to an extreme paternalistic relationship [4, 7, 14]. This statement indicates that the conception of benefi-
Clearly, children, who are a vulnerable population, re- cence could be considered to be paternalistic [23, 24].
quire representation by their legal guardians regardless The child’s moral development should not be consid-
of the C&R’s perception of the child’s moral develop- ered to be a limitation but a variation in the exercise of
ment [8], which is neither under discussion nor is con- obtaining consent, while taking into account the child’s
sidered a problem or ethical dilemma. The problem lies reasoning and common sense expressed in a language
in acknowledging the “other,” that is, the child as a adapted to their cognitive development [13]. The child’s
moral subject, which confirms the guardian’s decision will to volunteer must be free but with the joint support
owing to the understanding and moral structuring that of their guardian, C&R, family, and environment (heter-
they have received from clinicians or researchers onomy) [7, 10, 17, 25]. According to Kottow (2007), “the
through an educative process to which the family sub- ethical concept of informed consent depends on the
stantially contributes [7, 17]. Consequently, informed abolition of all unjustified medical paternalism.” [26]
consent does not end when the child leaves the practice Therefore, the aim of this study was to describe the in-
or agrees to participate in an investigation; conversely, it fluential practices that exist between C&R and children
is strengthened when the child practices self-care, estab- with chronic diseases during the process of obtaining in-
lishing their best interest in improving or contributing formed consent expressed in the physician–patient
to scientific knowledge above the needs characteristic of relationship.
their age [11, 13, 18].
A limited number of studies have identified the prac- Method
tices of researchers and clinicians regarding children’s A qualitative study was proposed to examine human be-
participation in research and their consent for treatment havior and the motives that govern it based on the social
[12, 13, 18]. Most studies have only provided a descrip- reality of a practice emerging from what they mean, as
tion of the individual abilities of children and adoles- in a “historical ontology of ourselves” [27] or a “criticism
cents (minors) and have not mentioned anything about of what we say, think, and do.” [28] From the epistemo-
the meaning of autonomy and influential practices that logical perspective, subjectivism was considered to be a
emerge from C&R to recognize the child’s autonomy position to recognize, understand, and interpret the
during the process of obtaining informed consent [7, meaning of meanings and practices [28]. The informa-
17]. However, they prove that the ethical challenges re- tion was analyzed using an interpretivist approach within
garding biomedical research in children and adolescents a transverse timeframe, placing the C&R at the center of
(minors) are not simple when considering the moral the phenomenon as the ones who construct, interpret,
capacity to make decisions, which could promote a rela- and modify reality [29, 30].
tionship of extreme paternalism [19].
Opel et al. believe that the participation of children in Population and sample
biomedical research is justified because they contribute Population. C&R who have direct contact with children
to improving treatments and diagnostic methods and are diagnosed with some type of autoimmune disease. To
important for establishing guidelines for the control and determine the population, several phone calls and visits
management of pediatric diseases because such research to specialists were made in order to come to agreements
cannot be conducted in adults [20]. In this sense, with them on when to apply the instrument within a 3-
Díaz-Pérez et al. BMC Medical Ethics          (2020) 21:122 Page 4 of 10
month period. Overall, 30 C&R agreed to participate in recognized researcher in polyarticular idiopathic arthritis
the study due to availability of time and the study’s rele- represented 4.8% of the population. Of the interviewees,
vance to their specialties and experience with children in 9.5% stated having significant experience in research
clinical care or biomedical research. Inclusion criteria in- with children and adolescents (Table 1).
cluded clinicians of different specialties practicing in the The C&R included a [convenience sample] of rheuma-
city of Barranquilla, Atlántico/Colombia, who consented tologists, pediatricians, and pulmonologists, whose clin-
to participate in the study. The study also included those ical practice has led to significant experience in caring
who had participated in research, have published scien- for minors..
tific articles, or are or have been conducting research The data collection technique used was the semi-
with minors. The research was approved by the research structured [focused] interview in Spanish, which was con-
ethics committee of the doctoral program in bioethics at ducted within an average time of 15 to 20min verbally
Universidad El Bosque, Bogotá / Colombia. The commit- and 20 to 30min for those who preferred to write it.
tee determined that the investigation is without risk ac- The instrument was applied at the clinicians’ offices
cording to resolution number 8430 of 1993 - Ministry of and in some cases at their residences according to the
Health of Colombia. The Declaration of Helsinki was consideration of the subject researcher, thereby always
taken in its principle to safeguard the confidentiality of ensuring a private environment to provide a strong sense
the personal information of the doctors and researchers of respect during participation and in the manner their
who participated in the research. responses were expressed. The setting was also condu-
Of the 30 interviewees, only 21 specialists met the in- cive for clarification of elements at the time of the pre-
clusion criteria, including providing informed consent, liminary analysis of the information or for the
providing clear responses to questions in both oral and investigator to clarify any aspect that could be misunder-
written interviews, and having proven experience in clin- stood. This only occurred once with a single subject re-
ical care or research with minors. Researchers who did searcher minutes after completing the interview, and
not have a minimum of 4 years of clinical experience they were allowed to clarify their answer.
dealing with minors, decided not to participate in the The interview went through an internal validation
study due to lack of time, or did not demonstrate a true process that allowed us to propose alternative questions
disposition when answering the questions were ex- as long as they fulfilled the objective of the question.
cluded. A pilot test was conducted for internal validation These methodological elements allowed for an analysis
of the instrument, which made it possible to improve of the content of the meanings of autonomy, respect,
the final drafting process of the questions to avoid pre- and justice. This was accomplished through accounts of
conceived ideas, as these could distort analysis of the in- subjective experiences with objective analysis to under-
formation. It also allowed for closer adherence to ethical stand the way in which physician–patient relationship-
requirements, such as confidentiality through informa- type power practices were constituted and the presence
tion encoding and interview application time. The in- of the principles of bioethics: justice, non-maleficence,
strument was also validated according to the criteria of beneficence, and autonomy. Each of the respondents re-
experts from several universities who are knowledgeable ceived a copy of the study at the end of the analysis and
on the subject. The final instrument had 15 open (10) did not provide any comments regarding changes or
and closed (5) questions, each having the purpose of completeness of information.
measuring each of the categories that had been pre- For qualitative data analysis, a description of the
established by the literature analysis. meanings of autonomy and influential practices by re-
The C&R had the following characteristics: 61.9% were searchers and clinicians was established regarding a
aged 21–30 years, 23.8% were aged 31–40 years, and child’s autonomy according to their moral maturity. A
9.5% were aged 60–69 years. The clinicians had an aver- semi-structured non-directive interview was conducted
age experience of 8–9 years of clinical practice. One clin- for this purpose, which was processed by analyzing the
ician who is also a researcher had 45 years of experience information to conceptualize the categories [31]. For
in both clinical and biomedical research. Finally, 66.7% these analysis dynamics, the Dragon Notes® and Atlas Ti
of clinicians were female pediatricians and 14.3% were 7.0® programs were used, for which the following ana-
male. A gynecologist who stated having experience with lysis technique was proposed:
girls with autoimmune diseases was interviewed, repre-
senting 4.8% of the population. A pediatrician and an – Count: The way of finding, in a preliminary
infectologist (9.6%) also mentioned having experience in way, what is known and the emergence of the
research with children. A rheumatologist/immunologist phenomenon regarding the meanings of
with experience treating children with autoimmune dis- autonomy and their relationships with
eases who was also a nationally and internationally influential practices.
Díaz-Pérez et al. BMC Medical Ethics          (2020) 21:122 Page 5 of 10
Table 1 Characteristics of the interviewees
Age n (%) Clinical Specialties Years of Active Total
(years) experience projects
with minors
21–30 13 (62) Gender Gynecology Pediatrics Pediatrics and Rheumatology and Total Average 8.8 No Yes n (%)
Infectious Diseases Immunology n (%) n (%)
31–40 5 (24) n (%) n (%) n (%) n (%) Median 4 19 0 21
(90.5) (0.00) (100)
50–59 1 (5) Female 1 (4,8) 14 (66.7) 0 (0.00) 0 (0.00) 15 Mode 2
(71.4)
60–69 2 (9) Male 0 (0,00) 3 (14.3) 2 (9.6) 1 (4.8) 6 (28.6) Minimum 1 0 2
(0.00) (9.5)
Total 21 (100) Total 1 (4,8) 17 (81) 2 (9.6) 1 (4.8) 21 (100) Maximum 45
n: frequency, (%): percentage
– Identification of patterns and themes: the most illness. In other words, the C&R favor constructing the
frequently repeated words were tracked to identify child’s moral judgments to establish a healthy relation-
categorical relationships and establish influential ship with themselves and their environment, thereby
relationships with the child. strengthening their will for better care as well as their
– Examination of the plausibility of the findings: the sense of utility, as shown in the following statements in
purpose was to contribute to the conclusions of the the constant dialogue category:
initial impressions, which made it possible to
determine the guidelines in the analysis stages and
Emerging category: constant dialogue
contrast the construction of conclusions.
C&R mention the need to promote dialogue with the
child to establish empathic links using different methods
Results
to achieve their understanding and increase their re-
Power relations: category analysis
sponsibility and autonomy.
The following categories were based on the influential
Question: Describe how you would tell a child about a
relationships between C&R when considering the child
new treatment and what determines the degree of infor-
as an autonomous subject.
mation provided.
Two types of influential relationships were mentioned
in the interviewees’ discourse: the deliberative model, in 
 Coded speech [E-21–1:41]: First, ease of
which the C&R act as a mentor, contributing to the con-
communication to provide clear information and
struction of the child’s autonomy and moral develop-
more so in adolescents because they have difficulty in
ment, and the paternalistic model, in which the C&R act
accepting the disease. Therefore, we must begin to
more as guardians and may even involve subjugation
explain the disease to the child in a basic way
practices; i.e., not taking the child’s opinion into consid-
because information reassures them and more so if it
eration and invoking the principle of beneficence as an
is repetitive and time is taken to provide the
ethical way to justify their practice based on regulations
information.
(principle of justice). 
 Coded speech [E-10–1:42]: I would explain the
benefits and possible adverse side effects verbally
Category: deliberative model
using brochures with text and images to achieve
In the deliberative model, the C&R act as teachers and
greater understanding.
contribute to the child’s moral development under per-
ceived elements such as autonomy and his or her under-
standing of the disease. Emerging category: participation
In their role as mentors, the C&R accompany the child According to the C&R, structuring the child to
and his or her family actively and reflectively through a strengthen their autonomy and moral development im-
doctor–child–guardian-type relationship, which favors plies gaining their participation as an active moral sub-
the child’s state of mind. This also contributes to motiv- ject and holding them accountable for their self-care
ating the child to pursue treatment and to understand practices in terms of following the treatment instruc-
the consequences of not undergoing it. However, the tions, i.e., being responsible for their actions.
C&R understand the importance of the beliefs of the Question: From your clinical or investigative practice,
child’s family, the configurative elements of cognition how do you think you contribute to the strengthening of
typical of the child’s age, and their experience with moral development, which is understood to be the
Díaz-Pérez et al. BMC Medical Ethics          (2020) 21:122 Page 6 of 10
child’s independence, freedom, and responsibility to Question: Doctor, from your point of view, can matur-
make moral judgments? ity that may be demonstrated by the child regarding self-
care be extrapolated to other areas of their life and, if so,

 Coded speech [E-7–1:209]: In clinical practice, it is in what sense?
the contact with the patient when addressing adverse
situations by means of a good doctor–patient 
 Coded speech [E-18]-[1:184]: Yes, because of the
relationship that leads to better results and also to positive stance they assign to their self-care projects
the patient’s cognitive development after the event. them to other areas or aspects of their life.

 Coded speech [E-9]-[1:212]: Contributing to their
ability to listen and their responsibility for making Category: paternalistic model
decisions regarding their health. C&R state that they contributed to the child’s develop-

 Coded speech [E-14]-[1:216]: Making them ment or moral maturity based on elements such as ac-
participate in their diagnosis, prognosis, and ceptance. When the C&R determine that the child does
treatment. not have a good understanding of the information and

 Coded speech [E-19]-[1:220]: Contributing to their their common sense is not developed, they consider that
autonomy so that they participate directly in it is owing to a lack of cognitive capacity, which may be
managing their treatment. affected by the type of illness that afflicts them, the lack
of maturity at their age, and suffering when experiencing
Emerging category: knowledge pain or fear. All these factors prevent the child from
For C&R, the child’s knowledge of their illness contrib- reaching an adequate degree of responsibility for their
utes to the type of doctor–patient relationship that may self-care. Therefore, the clinician has to behave as a
emerge, especially the deliberative one, which directly in- guardian owing to the child’s high vulnerability and even
fluences the child’s will, as in the way that they obtain refer them to psychological support along with the par-
and analyse information obtained on the internet, and ents. Thus, C&R are in a doctor–guardian–child-type re-
their mood and motivation, as stated in the following lationship, as represented in the following statements:
statements: Question: Doctor, how do you consider a child with
Question: Based on your experience, what would a autoimmune disease?
child’s ability to make an important decision regarding
their health, specifically their self-care, depend on? 
 Coded speech [E-6]-[1:257]: A subject who must
receive special care and assistance because of their

 Coded speech [E-6]-[1:131]: On their age, on their vital vulnerability.
knowledge of their illness, on the security that their 
 Coded speech [E-18]-[1:267]: A subject of care with
environment gives them, and on their experience with diminished autonomy.
the disease.

 Coded speech [E-6]-[1:133]: It depends on their Emerging category: submission
degree of knowledge of their disease and the This emerging category is related to the fact that C&R
commitment it generates, recognizing that given its immediately ignore the child’s autonomy when the child
chronicity, they should practice better self-care to does not accept what is set out by the C&R or presents
counteract relapses. arguments that go against the treatment proposed by
the clinician.
Question: Do you consider that the experience of Question: What elements do you think are important
pediatric patients with respect to their autoimmune dis- when considering whether a child can make a decision
ease contributes to the development of their moral judg- regarding the new treatment?
ments? If your answer is yes, justify your answer.

 Coded speech [E-1]-[1:91]: An autonomous child,

 Coded speech [E-5]-[1:155]: Currently, the that is, with recognition of their responsibility,
availability of information and technological because their disagreement denotes their lack of
advances make these type of patients more informed maturity.
about their disease and allows them to develop 
 Coded speech [E-9]-[1:102]: Accepting the benefits
moral judgments at a very young age. that the product gives them.

 Coded speech [E-21]-[1:166]: Yes, as long as they are
motivated to understand and practice their care in Emerging category: acceptance
the best possible way with or without their parents’ C&R consider that a child should accept the treatment
support. or research protocol designed for their care without
Díaz-Pérez et al. BMC Medical Ethics          (2020) 21:122 Page 7 of 10
further conflict as a way of proving their maturity, as POED should give the child a sense of usefulness so
represented in the following statements: that they recognize their responsibilities in terms of their
Question: What elements are important to consider care, and therefore, their moral capacity to help them
when deciding whether or not a child can make a deci- make the best decision based on heteronomy, thereby
sion regarding the new treatment? supporting the child’s capacity for action (agency) [15].
In turn, the principles of bioethics, such as a respect for

 Coded speech [E-9]-[1:102]: Accepting the benefits the others, beneficence, and justice, guide the ethical reflec-
product gives them. tions of C&R when considering the child at a given time
as an autonomous subject to give consent, keeping in
C&R also regard the effects of medication or treatment mind the idea of the child’s active conation, as explained
in general, as stated in the following responses: by Nussbaum [15], wherein the practices of C&R must
go beyond that stipulated by the norm when considering

 Coded speech [E-6]-[1:114]: They should accept the the child as an adult based on purely regulatory argu-
adverse effects. ments, for example, age, which may not be related to
their degree of maturity when they face their self-care
and protection, possibly owing to the child’s experience
Emerging category: Guardian
with the disease.
C&R consider that a child’s vulnerability is owing to ele-
Foucault stated that the idea that the child’s moral rec-
ments of their age or pathological status and the charac-
ognized by C&R must be based on a POED is confirmed,
teristics of the medications. Therefore, it is the
i.e., through the influential relationships that emerge
clinician’s duty to be guided by elements of his or her
while obtaining informed consent [34]. To provide the
judgment as an expert, beyond what the child or even
POED, the characteristics of each minor and degree of
the parents may consider. Therefore, clinicians, above
maturity that emerges from their self-care practices must
all, consider themselves as guardians, bearing in mind
be taken into account as well as their understanding of
the principles of bioethics (justice and non-maleficence)
the risks and benefits of the treatments. The above re-
of childcare, as represented in the following statements:
quires practices of subject objectification that will de-
Question: Based on your experience, what would the
pend on internal and external elements, i.e., ‘the subject
child’s ability to make an important decision regarding
is found to be divided within or divided from others’,
their health, specifically their self-care, depend on?
wherein this process is ‘objective’ [34].

 In short, the child’s vulnerability should not justify aCoded speech [E-14]-[1:143]: The limitations or
violation of their right to consent. Conversely, it is the
adverse effects that may occur due to medication
moral duty of C&R to contribute to the development of
administration.
their autonomy based on the informed consent process.
According to Herder, human beings come into the world
Question: Do you consider that the experience of
“weak [ …], needy [ …], lacking the teachings of nature [
pediatric patients with some type of autoimmune disease
…], lacking skills and talents,” as quoted in Kottow
contributes to the development of moral judgments? If
(2012) [35]. However, “man is nothing more than a
your answer is yes, justify your answer.
blade of grass, the most fragile thing in nature, but it is a

 blade of grass that thinks.” [36].Coded speech [E-12]-[1:161]: Yes, they are patients
According to the above, considering a child as mature
with few options who require the implementation of
depends a lot on the judgment and common sense de-
new support means.
veloped as a result of their experience with the disease.
Authors such as Nunner-Winkler and Sodian consider
Discussion that a child’s maturity is related to their experience with
What autonomy means, as stated by C&R with respect the disease when recognizing risks and benefits in line
to the child, is what regulates the influential practices with their negative or positive emotions, which struc-
when obtaining informed consent to consider the child tures the way of being and existing in the world that
as an active moral subject. However, we must consider could be perceived by the clinician as autonomy [37],
that factors inherent in the child as well as external fac- which was proved in this study.
tors (family, clinical, research, and sociocultural factors) In summary, the legal framework that defines the
contribute to the formulation and implementation of child’s autonomy and experiences defines their moral
strategies that strengthen the child’s moral development; development. This statement arises owing to their first
this element has been raised as a process of Differenti- being the legal obligation to take the child’s consent and
ated Objectivization [Educative] (POED) [32, 33]. the legal guardian’s consent and secondly, from the
Díaz-Pérez et al. BMC Medical Ethics          (2020) 21:122 Page 8 of 10
moral duty of the C&R to ensure the child’s moral develop- subjective wishes [inclinations] and put their life in dan-
ment by strengthening their self-care based on the under- ger. Therefore, C&R also consider the active participa-
standing and experience with the disease that afflicts them. tion of parents or legal guardian to be important.
Regarding the influential practices in the doctor–patient However, even if it seems paradoxical, when considering
relationship, it was found that the principles of autonomy the child as an active moral subject, they must respond
and beneficence emerged in the deliberative model, turning to different degrees of independence from their family.
the relationship into a trinomial of active participation Conversely, submission of the child is presented as an
(C&R–child–guardian). The principle of beneficence was influential practice of extreme paternalism when the
found to be at the time that the C&R provide elements C&R perceives a lack of desire for their care in the child
from the communication process related to providing clear or that their understanding is below the expected levels;
information, which contributes to the child’s moral devel- therefore, the guardian’s direct intervention is also ne-
opment so that he or she is aware of their decision and of cessary. This does not happen when it comes to research
the different risks and benefits to which they are exposed if because the guardian is informed about the care and if it
they do not think positively about their treatment or their is accepted, the minor becomes a passive subject in
duty toward future generations when talking about biomed- which consent could take the form of a simple step re-
ical research. This means that C&R increasingly require quired by a regulatory process. Although in research, the
communication skills but also require knowledge and eth- guardian is addressed, and if they do not accept it, the
ical attitudes to assess a child’s competencies, Drane (1999) child is not exposed to considering the information pro-
designed a methodology in which the criterion or principle vided, even vice versa, and if the child does not accept it,
of proportionality is taken into account for clinical decision it is advisable not to include them in the study.
making, considering the severity of the decision and the de- In POED, different nuances could be expected regard-
gree of moral competence of the child [37]. ing the practices based on the different models of the
Michaud mentions that there is a need to apply the doctor–patient relationship. According to the delibera-
principles of bioethics, but the rights of the child should tive model, C&R hope that the child is aware of their ill-
also be considered, and they should be considered as ness and acquire moral awareness of their care to the
subjects with their own personality and having rights extent that their experiences have a positive impact on
themselves [38]. In this sense, should a child be consid- their health. This element of moral development will de-
ered mature or autonomous? C&R affirm that this ac- pend on the child’s age and on the degree of independ-
knowledgement depends a lot on their level of ence they may have from their family and the level of
understanding of the disease and how they practice self- understanding of the information provided, that is, their
care in addition to the child’s degree of dependence on common sense. The opposite is the paternalistic model,
their parents. in which submission is a way of structuring the child be-
According to Labouvie-Vief, there is a relationship be- cause they are considered to be a passive subject of ex-
tween consent and parental authorization, wherein each treme care, worthy of protection and care. Therefore,
has a different purpose [39]; for example, the guardian’s C&R consider that structuring a child and perceiving
supervision is intended to protect the child from taking them as an autonomous subject is only possible when
unreasonable risks and to strengthen their autonomy they adhere to treatment and responsible self-care, re-
when making fair and responsible decisions for their gardless of their parents’ support, bearing in mind that it
health. Conversely, consent is a communicative process also depends on the type of disease.
with which one must try and strengthen the sense of
usefulness and ensure that the child adheres to treat- Limitations
ment for life. Even 9-year-old children have demon- Limitations were related to selective memory bias in the
strated the ability to make reasonable choices as long as research subjects. In this sense, an attempt was made to
these choices are explained to them using appropriate control the bias by means of complementary questions,
language [40, 41]. to avoid, for example, that they only recalled negative or
positive events, tending to exaggerate or beautify the
Conclusions phenomenon, that is, the positive or negative assent to
It is evident that a child’s moral structuring depends on participate in research or treatment.
individual characteristics particular to their evolutionary We emphasize that the data cannot be generalized to
stage and on their degree of understanding of the facts all populations and sociocultural contexts, since the con-
that surround them as well as their experience with the clusions may vary due to the perception that clinicians
disease. Thus, they initiate the differentiation suggested and researchers have on the moral structure of the
in POED and recognize the risks and benefits of con- minor, which can be observed during the process of
tinuing with their self-care, which may be above their obtaining consent informed.
Díaz-Pérez et al. BMC Medical Ethics          (2020) 21:122 Page 9 of 10
Abbreviations Received: 28 December 2019 Accepted: 1 October 2020
POED: Differentiated Objectivization Process [Educative]; C&R: Clinicians and
Researchers; Child: Child and adolescents
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