Scientific research concerning asylum seekers and related ethical challenges

Abstract

The term asylum seeker refers to a person of foreign nationality who seeks protection and residence permit in another state. Refugee status is granted to an asylum seeker who is given asylum. Around 1.3 million asylum seekers during years 2015 and 2016 arrived in Europe. Asylum seekers are a highly heterogeneous group in terms of cultural backgrounds, religion, education and language skills. In their countries of origin, asylum seekers have faced oppression, possibly even violence, which may cause them to be suspicious of other people, especially the authorities, also in the country where they are seeking asylum. Due to the aforementioned factors, asylum seekers are a vulnerable group from the perspective of research. An increasing amount of research is conducted globally in different fields of science among asylum seekers, also in the field of diabetes research. It has been shown that asylum-seekers carry a high risk of developing diabetes, and the prevalence of diabetes among them has been shown to be higher as compared with the reference population, already six months after arrival. Post-traumatic stress disorder, which is common among refugees, may be related to high levels of Type 2 diabetes among them. Clinicians, scientists and policymakers need to take several issues into account when assessing and treating diabetes among vulnerable immigrants. Recently, a need for research among asylum seekers has been recognised, but on the other hand, the discussion has emerged on the ethical acceptability of research in this population. There are several ethical issues to be a need for identification of Issues under discussion include what should be taken into account and which ethical questions emerge in particular? The research process consists of versatile steps connected to interpersonal interactions. The professional ethics of the researcher plays a key role. Its central elements include respect for human dignity, confidentiality, honesty and fairness. The fundamental question is whether it is generally ethically acceptable to ask a person seeking asylum to participate in a scientific study. Indeed, opinions against such research have been expressed. However, many experts agree that research in asylum seekers can be carried out as long as the principles of research ethics with special considerations are taken into consideration. Research concerning asylum seekers requires careful planning and consideration of the justifications for the study as well as ethically sustainable ways conduct research. Leaning has described the preconditions for ethically acceptable research conducted among asylum seekers. As a starting point, she argues that, as with other vulnerable groups, research may only be conducted when it is necessary or urgent for the health and well-being of the research subjects and only if the study cannot be implemented with a different population. Respect for autonomy, which is closely connected to the voluntary nature of research and the informed consent process, is the most crucial ethical principle of research in human subjects. Voluntariness implies that consent for participation in research is given by a subject without any kind of coercion, and that the research subject has a proper competence to understand what the research entails. Furthermore, the subject must be capable to express his/her decision. Informed consent is culturally bound and it might thus have a different meaning to asylum seekers compared to a researcher. In some cultures, the role of relatives plays a particularly important role in decision-making, and the researcher might thus end up discussing the matter with a head of community/household. However, it must be noted that the consent given by this person does not supersede the consent of refusal given by the individual asked to participate in the study. Further challenges emerge in connection with language; indeed, data collection often requires a professional interpreter who understands both elements related to consent as well as the nature of research. However, there are several issues researchers must take into account in relation to using an interpreter: (1) competence, which involves the interpreter’s linguistic skills and understanding of research, (2) the role of the interpreter, which may be either passive or active and affects the reliability of the research material and (3) cultural factors, which may cause a conflict between the interpreter and the research subject, e.g. regarding factors related to gender. In some situations related to asking for consent and collecting research data, the research subject may only be approached by a researcher who is of the same gender as the research subject. It must also be considered that some concerns related to the protection of privacy may arise if the researcher or interpreter belongs to the same ethnic group as the research subject. ARTICLE International Diabetes Nursing, Vol. 14, 2017, 96–98