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Ethics, Reflexivity, and “Ethically Important Moments” in Research
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 thereExpand
Slight/Mild Sensorineural Hearing Loss in Children
There was no strong evidence that slight/mild bilateral sensorineural hearing loss affects adversely language, reading, behavior, or health-related quality of life in children who are otherwise healthy and of normal intelligence. Expand
“You're one of us now”: Young people describe their experiences of predictive genetic testing for Huntington disease (HD) and familial adenomatous polyposis (FAP)
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. Expand
How to facilitate decisions about surplus embryos: patients' views.
There are practical ways to assist people in making decisions about their surplus embryos, which could be easily implemented, and interest was demonstrated in the possibility of directed donation to other couples. Expand
Human Research Ethics Committees: Examining Their Roles and Practices
Qualitative data is presented on how human research ethics committee members and health researchers perceive the role and function of the committee and how this has the potential to lead to poor relations and mistrust between ethics committees and researchers. Expand
“We’re checking them out”: Indigenous and non-Indigenous research participants’ accounts of deciding to be involved in research
Understanding research participants’ motivations about taking part in research can lead to research practice that is more respectful and responsive to the needs of Indigenous communities and abides by the values of Aboriginal communities. Expand
Fertility in Turner syndrome
It is essential that further research is performed to improve maternal and foetal outcomes for women with TS and considered consideration of homologous fertility preservation techniques in children only within specialized centres, with informed consent using protocols approved by a research or clinical ethics board. Expand
Consent in paediatric research: an evaluation of the guidance provided in the 2007 NHMRC National statement on ethical conduct in human research
The concept of levels of maturity is a useful addition to the National statement on ethical conduct in human research, which help determine whether a child or young person's consent is necessary and/or sufficient for participation in research. Expand
Ethical Principles for the Management of Infants with Disorders of Sex Development
The ethical principles developed by the Halifax Resolution group were formulated by an analytic review of clinician reasoning in particular cases in relation to established principles of bioethics in a process consistent with the Rawlsian concept of reflective equilibrium as the method for building ethical theory. Expand
“Holding your breath”: Interviews with young people who have undergone predictive genetic testing for Huntington disease
This work aimed to explore the experience of predictive genetic testing for HD from the young person's perspective and to document the impact that testing has upon various aspects of young people's lives. Expand