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To what extent can researchers plan for ethical issues when working with children and young people? People often think of ethics or morals, as a rule for distinguishing between what is right and wrong. Something that springs to mind, is the saying; ‘Do unto others as you would have them do unto you’ or the religious creed of the Ten Commandments, ‘Thou Shalt not kill’. This is a common way of defining “ethics” and the norms for conduct that distinguish between unacceptable and acceptable behaviour.
Most people learn ethical norms within the home, at school or in other educational settings. Majority of people acquire their sense of right and wrong during their childhood as moral development occurs throughout life. Simply because as human beings, we pass through different stages of growth as we mature. Ethical norms can be classed as ubiquitous, simply because one might be tempted to regard them as simple ‘commonsense’.
A plausible explanation of these disagreements is that as humans, we can recognise some common ethical norms, but majority of individuals may apply and interpret these norms in different ways in respect of their own life experiences and own values.
Our society has legal rules that govern behaviour, but ethical norms can be broader and more informal than laws. However, most societies use laws to enforce moral standards and ethical and legal rules use similar concepts, it is however crucial to point out that law and ethics are not the same. For example, an action could be classed as legal, but illegal or unethical, but ethical. Society also uses ethical concepts and principles to interpret laws, evaluate and criticise. Within the last century, citizens were urged to disobey laws in order to protest what they classed as unjust laws that were immoral.
Within research with children and young people there are several reasons why it is important to adhere to ethical norms. Firstly, it promotes the aims of research and examples include, truth, avoidance and knowledge such as misrepresenting research data promote the truth, prohibitions against fabricating, falsifying and avoid error. Second, is that research often involves a great deal of cooperation and coordination amongst different people in different institutions and disciplines. Ethical standards promote the values that are essential to collaborative work, which include fairness, trust, accountability and mutual respect. For example, many ethical norms in research, such as guidelines for authorship, data protection policies, and confidentiality rules are designed to protect intellectual property interests, but still encouraging collaboration amongst the institutions. Therefore, researchers want to receive credit for their work and contributions to be disclosed prematurely and do not want to have their ideas stolen. Third and the main standard is that many of the ethical norms help to ensure that researchers can be held accountable to the public. Many of the norms with research are that it promotes a variety of other important moral and social values, for example social responsibility, human rights, compliance with the law, and health and safety. Critically, ethical lapses in research can significantly harm humans, students and the public. A researcher who may fabricate data in a clinical trial could harm patients and a researcher who fails to abide by regulations and guidelines, as set out in the ethical standards, could jeopardise his health and safety or the health and safety of staff and students in relation to radiation or biological safety. Consequently, ethics are often a matter of trying to find a balance between opposite extremes.
Ethical research with children has changed significantly in the past 30 years and modern standards of research ethic may considerably depend on modern transparent research methods and a respectful relationship between children and researchers. During the 1947s lawyers stressed the dangers of research and insisted that willing consent should be obtained, although it was presumed that children were too young to give consent and consequently banned from participating from research. Traditionally, children were not allowed to consent for themselves for medical
Children traditionally were not allowed to consent for themselves in terms of medical procedures and even for the simplest procedures. Today, there are three approved models of consent for children. First, children who are classed as competent, which are sometimes called ‘minors’ may provide consent on their own. Second, children may provide an assent with parental consent and third, some children, due to their developmental stage or age cannot provide consent until parental consent is sought. Critically, this can raise serious ongoing challenges and some of the difficulties can arise from assessing competence, best interests as well as, motivations. As well as dealing with conflict between children, parents and or with children and youth, many of which may be living on the street or in a crisis situation, to name just a few examples.
Children are traditionally considered more vulnerable than adults and this is because of their lack of competence to take part in making decisions. This could be especially around complex issues, such as health care and inclusion, in research. This vulnerability means that parents/ guardians, educators and health care professionals must be trusted to act in their best interests and make decisions for them. Moreover, this vulnerability has often meant that some children are simply excluded from research which is often in short-sighted attempts to protect them from harm. Consequently, this has resulted in excluding children from research and in research, failed to learn about children and to develop better and new ways to treat, approach and protect them.
Alderson (2004) states that ‘Ethicists teach the rules for ethical research are based on three main ways of thinking about what is ‘good’ research: the principles – of doing good research because it is right and correct thing to do. Rights based research – involves respect and children’s rights, such as providing for basic needs for example, healthcare and education. Protection – from child abuse and discrimination and participation – is vital during ethical research in having their own views listened to and respected by adults. This is based on good research, rather then relying wholly on adult’ principles and values. The best outcomes based ethics basically means, working out how to avoid or reduce harm and costs’.
Researchers may produce very misleading results that are produced in policies that could damage children’s lives. Researchers may upset children by worrying them by making false promises or betray them. Critically, moral questions about power, honesty and respecting people can arise throughout the research process. Although a problem, often seldom mentioned by ethicists, is a risk on published research reports that increase stigma and disadvantage children and young adults. However, these reports can help researchers address such risks and problems and learn how to deal with them.
An actual research that wasn’t properly planned and a particular ethical issue uncovered was when, as stated by Dennis, 2009 ‘A Japanese graduate student, was translating at a parent/teacher conference and the teacher asked her to pass along comments to the parents that Hanako’s thought were rude. She did not want to do it. She intervened covertly because she did not pass along the comments as they had been expressed by the teacher, but she pretended to do so. She tried to make the point the teacher was making, but in a much more polite, positive, and from Hanako’s perspective, acceptable way’. Critically, this issue would have failed to demonstrate the teacher’s irritation and pose an ethical risk, as this interpersonal intervention was not inclusive. It could pose a potential harm, as it failed to promote moral and social values and follow ethical standards that promote the values that are crucial to collaborative work, such as mutual respect and trust, especially when working with children and young people.
Another actual research that the researcher planned well for ethical issues was that off, Naz Rassool. Rassool (2004) was interested in working with a group of 14 and 15 year olds that raised several ethical and practical issues. Rassool felt that the pupils should not be exploited emotionally due to the nature of the work as the pupils were in a critical phase of their development. The research had to be very sensitive through its investigations of identity formation. Therefore, the ethical issues were paramount and persisted throughout the research. Rassool found the most effective way to address the theoretical research question to the pupils, incorporating the concepts of religion, knowledgeability, social change and individual reflexivity, all provided Rassool the theoretical framework. To generate a common understanding of the purpose of the research, Rossool conducted a seminar with staff involved, which addressed the aims of the research, ethical issues and the purpose of the activities. Other ethical issues, revolved in receiving parental consent and whether this as absolutely necessary, if the activities formed a part of the teaching programme. However, since the ultimate aim is to answer research questions it is crucial that all ethical issues are applied throughout. Critically, however when working with children and young people, it is normal protocol to seek parental consent, especially when conducting research. Rossool’s research promoted the aims of research; followed ethical standards and promote the values, which are essential for collaborative work, such as mutual respect, trust and fairness. It promoted moral and social values.
Research heavily relies on the public to take part in the research and if this cooperation is to continue, then researchers have to keep high ethical standards. Alderson (2004) states ‘public anxiety about the removal of children’s organs without consent, partly for research shows how research ethics, consent and rights may change, especially when children are involved’. Similar changes may occur in social research and therefore, it is crucial to gain foresight about social research from the hindsight of medical research. Critically many medical journals refuse to publish these reports that may not have the backing of ethical committee approval and therefore, researchers need to keep abreast of the ethical standards. Gaining ethics committee approval can take time and can protect people who take part in the research and protect them from litigation and criticism.
The extent researchers can plan for ethical issue is by involving children and young people and should only be conducted when the research question posed is crucial to the well-being and health of children. Ethics help researchers to be more aware of hidden problems, but do not always provide the right and easy answers. However, a research procedure which is not intended directly to benefit the child subject is not necessarily either unethical or illegal. Such research includes observing and measuring normal development and the use of ‘healthy volunteers’ in controlled experiments. The participation of children is indispensable and this is because the information available from research on other individuals cannot answer the question posed in relation to the children. Therefore, the study method is appropriate for children and the circumstances in which the research is conducted, provides for the emotional, physical, emotional and safety of the child.
The challenges relating to ethical and consent issues involving children and young people in research are numerous and require careful consideration and yet are not insurmountable. Critically, as a priority, researchers must engage with the legal, moral and ethical imperatives offered by UNICEF. As Alderson quoted, that Rights based research – involves respect and children’s rights and as part of the UN Convention on the Rights of the Child in particular. The researcher needs to give diligence to Article 12, and the article due and diligent consideration in its entirety, by respecting the views of the child. Researchers must not only commit to inclusive practices, but also maintain assiduousness in ensuring that children and young people are respected participants in the research process, from selection of methodologies to the dissemination and reporting of results. With these guidelines in mind, children should be offered opportunities to genuinely participate in research. When adults are making decisions that affect children, children have the right to say what they think should happen and have their opinions taken into account.
Ethical considerations are paramount in children’s research and management of these considerations can be very influential on the research that is ultimately completed with children and young people. The major issues discussed include, protection and safety versus participation, the role of ethics committees and the impact of consent processes.
In summary, negotiating ethics approval and access to children and young people remains a major challenge. More attention needs to be given to facilitating information and understanding participatory research across all groups involved to minimise culture clashes and increase the understanding of the nature of participatory research. As Dennis, 2009 quotes ‘There is one ethical principle that worked differently: all people’s voices should be included in decision making thus those who oppose egalitarianism should not be allowed to make decisions that limit the inclusion of others’ voices. In this case, there is no way to achieve egalitarian inclusivity with people who would limit the egalitarian and inclusive treatment of others. Thus, the two aspects of this ethical principle do not contradict each other and do not need to be criticised on these grounds’.
The extent researchers can plan for ethical issue is by ensuring the adoption of methods which are respectful to the children and is also crucial that researchers take ethics seriously. This may mean researchers moving away from traditions that in the past may have considered children as ‘unthinking human beings’. Instead, it places the emphasis on respecting children as dynamic people, which makes this method more realistic and productive. This is consequently classed as ethical, as most ethics encourage research methods with children participants.
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