Ethical uneasiness and the need for open-ended reflexivity: the case of research into older people with a wish to die

Ethically important moments as data: reflections from ethnographic fieldwork in prisons

“…It highlights that something different to what is desired or expected is going on – something out of the ordinary, a disruption or discontinuity from the ‘normal’, which may be peculiar to that setting, or to that particular circumstance or moment. In this respect, as van Wjingaarden et al (2018) argue, ‘ethical uneasiness can be seen as an important tool’ (p. 328). Identifying an ethically important moment is significant because it places the researcher in a different relationship to the field.…”

Assistance in dying across borders: How the transnational circulations of persons, terms and themes influence the construction of a public problem

“…The Netherlands and Belgium appear to be the first countries to debate these questions. In 2016, the Dutch Liberal party 'Democrats 66 0 drafted a bill that would give access to assistance in dying to elderly feeling that their life is "completed" (van Wijngaarden et al, 2018). In 2017, the KNMG took a position arguing that physicians would still be involved in euthanasia if such a bill was passed notably because patients would need to be assessed for decision-making capacity (KNMG, 2017).…”

When people matter: The ethics of qualitative research in the health and social sciences

“…The most common procedure for guaranteeing an ethical study is to submit it to an ethics review board. The purpose of these review boards is to ensure that all research is carried out in such a way as to respect and safeguard participants (Busher & James, 2015;Wijngaarden et al, 2018). In general terms, review boards and codes for ethical research with human beings are based on four principles and obligations, which in turn are derived from the 'Nuremberg Code' and the 'Helsinki Declaration' (Halse & Honey, 2007): respect for autonomy, non-maleficence, beneficence and justice.…”

“…In the world of research, ethical practice implies that the relationship we establish with participants should respect human dignity and integrity, and should be one in which people feel safe, comfortable and among friends (Simons, 2009). To this end, research projects should not only ensure a high degree of quality and scientific rigor (Bryan & Burstow, 2018), they should also respect a basic set of ethical principles: the principle of informed consent, the right to withdraw at any moment, confidentiality, privacy, non-coercion and protection against possible harm (Josselson, 2007;Wijngaarden et al, 2018). Ethical questions are therefore often complex (Hammersley, 2015;Stutchbury & Fox, 2009).…”