From Regulating Research Ethics to Lived Encounters. Research Ethics in Studies Involving Children and Young People II

Niina Rutanen & Kaisa Vehkalahti (eds.)

Abstracts of the chapters

Chapter 2

Johanna Kiili & Johanna Moilanen: Children in international child protection research – research ethics perspective

The aim of this chapter is to find out how children are involved in research activities in recent international child protection research and what kinds of ethical decisions are made by researchers regarding children’s participation. The complexity of children’s participation in research activities is analysed through an integrative literature review. The study shows that ethical emphasis is on issues such as anonymity, privacy and avoidance of harm, and that professionals act as gatekeepers who primarily decide if children can participate in research activities. Researchers are reluctant to problematize the gatekeeping role of the professionals, as they are dependent on them. Cooperation with professionals was seen a fundamental condition for research activities and thus researchers must trust in professional ethics and competence in determining what is “child’s best interests”. Children’s right to self-determination and the right to make informed decisions were the most challenging ethical principles to implement in practice.

Keywords: research ethics, child protection, children’s participation, informed consent

Chapter 3

Liisa Nieminen: Biobanks promoting children’s health and welfare. A legal analysis.

The chapter deals with children's rights as patients, in medical study and in biobanks. Different laws recognize different minimum ages when a child may decide on his/her participation independently. According to the law concerning medical study there is a crucial significance on the age of 15 years whereas the patient law gives significance for the child's degree of maturity in the estimating of which with the physician has a significant role. According to the Biobank law the parent gives a consent for the child, but the opinion of the minor shall be taken into consideration then. This section probably requires specifying in the law drafting process under discussion.

Even though to the children's rights already more significance than in 1980 or the 1990's is given, there is room for improvement still in it. The children have to be protected but this does not mean that other people know better the best interest of the child in the individual matter. In the critics' opinion, too much power to make a decision on the child's degree of maturity belongs to the physicians. Protecting the child must not mean restrictions on his/her rights to participate.

According to the UN Convention on the Rights of the Child the states shall respect the responsibilities, rights and duties of parents to provide appropriate direction and guidance on the exercise by the child of the rights recognized in that convention. It indeed is the most important that cooperation between a child, parents, researchers and physicians will function and everybody tries to carry out the best interest of the child.

Keywords: children's rights, biobanks, medical study, patient

Chapter 4

Mervi Kaukko, Riikka Korkiamäki & Anna-Kaisa Kuusisto: From normative ethics to lived encounters: research-based ’hanging out’ with unaccompanied asylum-seeking youth

This chapter explores how ethical principles and relational practice intersect in research with unaccompanied children and youth. We discuss the possibilities of encountering unaccompanied asylum seeking minors in ways that produce new research knowledge, while also ensuring that the research addresses the vulnerability of the participants in an ethically sustainable way. The chapter draws on long periods the authors’ ”hanging-out” with unaccompanied minors in the context of their research studies, with the aim of building reciprocity and mutual understanding. The chapter argues that understanding the field with all its relationality is a central part of the ”hanging-out” in research contexts, and that trust and participation require negotiations that run throughout the research process.

Keywords: normative ethics, relational ethics, lived ethics, trust, unaccompanied asylum seeking minors.

Chapter 5

Johanna Olli: The research consent or assent for observation or video research of young children and those who communicate in other ways than with words

Young children and those who communicate in other ways than with words are seldom asked for research consent. However, voluntary participation is one of the central principles in research ethics, and there is no reason why it should not apply to children in observation and video research. Therefore, it is necessary to seek the child’s own assent for participation, in addition to the child’s guardian’s informed consent. Even though the legislation or research ethics guidelines in Finland do not include precise instructions for the consent of young children and those who communicate in other ways than with words, the legal rights both of being protected and to participate in decisions concerning their life apply also to the research process. Seeking assent from children coincides with the researcher’s ethical, ontological end epistemological understandings, such as the conceptions of similarity or difference between children and adults. Ethical ways of seeking the child’s assent include informing the guardians sufficiently, in order that they don’t prevent the child from participating due to unnecessary concerns, and being sensitive in encountering the child, as well as using a suitable communication method for each individual child. It is also important to see assent as a continuous process, and make interrupting or withdrawing easy for the child. Seeking assent influences the whole research process through the research relationship where the child is respected, from the planning phase to the publication of the results. In this chapter, I examine the question of assent by using previous research literature and my ongoing doctoral study as an example.

Keywords: children with special needs, observation, toddlers, augmentative and alternative communication, consent, research ethics, disabled children, video research

Chapter 6

Marleena Mustola & Johanna Kiili: Crying, snotty child in a closeup: Can childhoods represented in blogs be ethically studied?

In social media, it is more and more common that adults share texts, images and videos concerning their parenthood and their children. This kind of sharenting-activity (share + parenting) is ethically complex phenomenon, since the rights of the parents and the rights of the child intersect. Likewise, it is not easy to conduct research on sharenting, because there are ethical tensions involved. In this chapter, we will consider, if it is possible to study – in an ethically sustainable manner - childhoods represented in blogs. As an example, we use research process, in which a blog containing stories and images of crying children was examined. Even though there are several problems regarding this blog data, such as the lack of consent from children and the lack of their anonymity, also the benefits of this kind of research should be considered. Instead of shutting the phenomenon out of the scientific consideration because of the ethical difficulties and discomfort, it should be noted that studying it has advantages for both children represented in social media and the whole society.

Keywords: childhood studies, social media, ethics, sharenting, rights, privacy

Chapter 7

Saija Benjamin, Pia-Maria Niemi, Arniika Kuusisto & Arto Kallioniemi: Ethical considerations in research on children and young people's worldviews. 

This chapter investigates the ethical questions researchers need to contemplate when conducting research about children and young peoples’ worldviews. The focus of this chapter is on the Finnish context that has experienced many societal changes over the last few decades that have shaped the religious and non-religious landscape of the society. In this chapter we discuss the ethical questions related to the research procedures when addressing children and young people’s worldviews directly as well as when investigating topics related to these issues. This chapter discusses the different stages of the research process from the research design to the methodology to the researcher’s position and values to the responsibilities related to the data analysis and dissemination of the findings. The postulations in this chapter are based on national and international regulations and ethical guidelines concerning child and youth research with a special focus on worldview research, and portrayed by practical examples from prior studies.

Keywords: worldview sensitivity, religious communities, religions, worldviews, researcher’s position

Chapter 8

Matilda Wrede-Jäntti: The relationship between researcher and young interviewee in longitudinal qualitative research

In this chapter an ethical discussion is conducted on the relationship that evolves between the researcher and his/her interviewee in a specific form of longitudinal qualitative research; when the same researcher meets the same interviewee face to face over time, and the interviewee is a young person in a challenging life situation. The central theme are the encounters between the researcher and the interviewee and the relationship that develops between them during the study. I examine main four views on the relationship; how to understand the roles of the researcher and the interviewee, choose the place of the interview, see the power position of the target group and how to influence the atmosphere of the interview?

The presented views are closely connected to the relationship, which in turn reflects a crucial part of longitudinal studies: the length of the relationship. This, as a precondition for high quality qualitative research is that the researchers can produce a safe atmosphere and make the interviewee feel his/she has been seen and understood. The trust in turn strengthens a more unofficial and personal relationship. However, this may also raise unrealistic hopes among the interviewees, for instance of getting help from the researcher. By presenting an example I discuss some ethical questions that have risen within the researcher; what obligations does a confidential relationship entail for the researcher? Should the researcher, in the presented example, give advice to the interviewee or should she perhaps make a report to child protection services - regardless of the fact that she is not obligated to do so by law? I hope the questions will generate discussion in the scientific community.

Keywords: longitudinal qualitative research, interviews, youth, ethics, postgraduate studies                  

Chapter 9

Anu Alanko ja Jaana Juutinen: Following the ethical traces - reading the research tools and spaces through actor-network-theory

In this article, we discuss research tools and spaces intertwined with ethical questions in childhood research. We place our research on the premises of childhood research where children are recognized as active agents also in research practices. Theoretically we base our thinking on actor-network theory in which the connectedness of human action with the material world is acknowledged. Actor-network theory is being developed within the science and technology studies which is also interested in the research practices, and in the production of scientific knowledge as a process where both human and non-human elements interact together. In this article, we present two extracts from our research data through which we present the data collection as a process were multiple materials interact. We focus on the research tools that are used for recording data, namely the tape recorder and video camera. Besides these, we consider how research space takes part in the data collection process. Through the data examples, we aim at describing how research tools and spaces together with us human actors take part in data collection both supporting the process but also challenging it in many ways. From the point of view of children’s rights, an important ethical starting point is to recognize their right for participation, hence, understanding them as active participants in the research process.  

Key words: actor-network-theory, research ethics, research tools, research spaces

Chapter 10

Elina Viljamaa & Susanna Kinnunen: Mothers doing research with their own children - wondering, bafflement and happiness

When mothers do research at home among their own children, they come across a variety of ethical questions. The arrangement raises a lot of questions and wondering in people outside the home, as it does in the researchers themselves.  Some of the issues are the kind that researchers working among children generally encounter, while others pertain specifically to the intimate family relationship. Through the position of a mother, the researching mothers gain, to a certain extent, almost an outsider’s view of the practices and ethical issues related to research work. Then again, researching mothers must adapt their position as a researcher to match the research carried out in intimate family relationships.  The observations of researching mothers are not restricted only to ethical issues that pertain to the research they do among their own children, but rather the discussion is extended to cover research carried out among children in general, and, in even more general terms, to encompass questions one encounters when living with children. The ethical and methodological questions become tightly intertwined and take shape as tangible actions. All these actions are influenced by the idea that research is not something that is separate from real life, but it is a part of actual life with children, which continues on even though the research ends.

Keywords: narrativity, childresearch, intimate family relationships in research, mother doing research, own children in research