Ethical tensions are part of the everyday practice of doing research—all kinds of research. How do researchers deal with ethical problems that arise in the practice of their research, and are there conceptual frameworks that they can draw on to assist them? This article examines the relationship between reflexivity and research ethics. It focuses on what constitutes ethical research practice in qualitative research and how researchers achieve ethical research practice. As a framework for thinking through these issues, the authors distinguish two different dimensions of ethics in research, which they term procedural ethics and “ethics in practice.” The relationship between them and the impact that each has on the actual doing of research are examined. The article then draws on the notion of reflexivity as a helpful way of understanding both the nature of ethics in qualitative research and how ethical practice in research can be achieved.
ObjectiveTo review the literature on moral distress experienced by nursing and medical professionals within neonatal intensive care units (NICUs) and paediatric intensive care units (PICUs).DesignPubmed, EBSCO (Academic Search Complete, CINAHL and Medline) and Scopus were searched using the terms neonat*, infant*, pediatric*, prematur* or preterm AND (moral distress OR moral responsibility OR moral dilemma OR conscience OR ethical confrontation) AND intensive care.Results13 studies on moral distress published between January 1985 and March 2015 met our inclusion criteria. Fewer than half of those studies (6) were multidisciplinary, with a predominance of nursing staff responses across all studies. The most common themes identified were overly ‘burdensome’ and disproportionate use of technology perceived not to be in a patient's best interest, and powerlessness to act. Concepts of moral distress are expressed differently within nursing and medical literature. In nursing literature, nurses are often portrayed as victims, with physicians seen as the perpetrators instigating ‘aggressive care’. Within medical literature moral distress is described in terms of dilemmas or ethical confrontations.ConclusionsMoral distress affects the care of patients in the NICU and PICU. Empirical data on multidisciplinary populations remain sparse, with inconsistent definitions and predominantly small sample sizes limiting generalisability of studies. Longitudinal data reflecting the views of all stakeholders, including parents, are required.
There has been much debate about the psychosocial effects of predictive genetic testing in minors. The majority of this debate has been theoretical, with little empirical evidence published. We conducted in-depth interviews with 18 young people who had undergone testing, to explore the range of harms and benefits that they perceived were associated with their tests. Participants were eight individuals who were tested for Huntington disease (two gene-positive, six gene-negative) and ten who were tested for familial adenomatous polyposis (five gene-positive, five gene-negative). At the time of their test they ranged from 10 to 25 years of age. When interviewed they ranged from 14 to 26 years of age. Harms described included knowledge of future illness, witnessing distress in parents, negative effects on family relationships and friendships, effects upon employment and school, experiencing regret, feeling guilty and having to confront difficult issues. Benefits included knowledge of gene-negative status, relief from uncertainty, witnessing relief in parents, feeling able to plan for the future, positive effects on family relationships and friendships, feeling empowered and experiencing a sense of clarity about what is important in life. Harms were described in relation to gene-negative test results, as were benefits in relation to gene-positive test results. The testing process itself had several positive and negative effects for young people, distinct from the actual test result. Future research concerning the effects of predictive genetic testing in young people must remain broad and should aim to measure the beneficial as well as the harmful effects that resonate for young people themselves.
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