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Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

To disclose, or not to disclose? Context matters (Papers: Vasiliki Rahimzadeh, et al 2014)0

Posted by Admin in on May 1, 2016
 

Abstract: Progress in understanding childhood disease using next-generation sequencing (NGS) portends vast improvements in the nature and quality of patient care. However, ethical questions surrounding the disclosure of incidental findings (IFs) persist, as NGS and other novel genomic technologies become the preferred tool for clinical genetic testing. Thus, the need for comprehensive management plans and multidisciplinary discussion on the return of IFs in pediatric research has never been more immediate. The aim of this study is to explore the views of investigators concerning the return of IFs in the pediatric oncology research context. Our findings reveal at least four contextual themes underlying the ethics of when, and how, IFs could be disclosed to participants and their families: clinical significance of the result, respect for individual, scope of professional responsibilities, and implications for the healthcare/research system. Moreover, the study proposes two action items toward anticipatory governance of IF in genetic research with children. The need to recognize the multiplicity of contextual factors in determining IF disclosure practices, particularly as NGS increasingly becomes a centerpiece in genetic research broadly, is heightened when children are involved. Sober thought should be given to the possibility of discovering IF, and to proactive discussions about disclosure considering the realities of young participants, their families, and the investigators who recruit them.

Rahimzadeh V, Avard1 D, S’ne´cal K, Knoppers BM and Sinnett D. To disclose, or not to disclose? Context matters. European Journal of Human Genetics (2015) 23, 279–284
Publisher (open access): http://www.nature.com/ejhg/journal/v23/n3/pdf/ejhg2014108a.pdf

On Being Ethical in Geographical Research (Books: Iain Hay 2016)0

Posted by Admin in on April 30, 2016
 

Synopsis: Ethical research 1n geography is characterized by practitioners who behave with integrity and who act m ways that are just, beneficent and respectful. Ethical geographers are sensitive to the diversity of moral communities within which they work and are ultimately responsible for the moral significance of their deeds. This chapter explains the importance of behaving ethically provides some key advice on the conduct of ethical research and provides some examples of ethical dilemmas.

This chapter is organised into the following sections

Introduction
Why behave ethically
Principles of ethical behaviour and common ethical issues
Truth or consequences? Telelological and deontological approaches to dealing with ethical dilemmas 1n your research
Condusion

Hay, I. (2016). 3 On Being Ethical in Geographical Research. Key Methods in Geography, 30-43. London. Sage
Google Books: https://books.google.co.uk/books?hl=en&lr=&id=7hcFDAAAQBAJ&oi=fnd&pg=PA30&ots=TBQLps2S9u&sig=d5pAkjYw0HM1LMD1oR_OpB_EKg0#v=onepage&q&f=false
Publisher: https://au.sagepub.com/en-gb/oce/key-methods-in-geography/book242938

Association of Law Teachers – Research Ethics Statement0

Posted by Admin in on April 28, 2016
 

Excerpt: This Statement was drawn up by an ALT Research Ethics Sub-Committee and approved by the ALT Committee following consultation with the wider ALT membership. We welcome comments on this statement and will keep it under review.

This Statement has been drawn up with reference to other ethics statements and ethical guidelines such as those published by the Economic and Social Research Council, the British Education Research Association, the Socio-Legal Studies Association and the Academy of Social Sciences.

BACKGROUND

The Association of Law Teachers (ALT) is made up of law teachers from both higher and further education, and for the last 50 years has played an active role at the heart of legal education. As one of the major learned associations, we recognise that you, our members, may be looking for guidance on the ethical conduct of legal education research.

Access the statement

Ethics assessment in different fields: Social sciences (SATORI Deliverable 1.1)0

Posted by Admin in on April 23, 2016
 

Excerpt: This report on ethical assessment of research and innovation in social sciences is a part of a comparative study across scientific fields and disciplines within a wider analysis of EU and
international practices of ethical assessment, made by the SATORI project. Ethical assessment in this analysis covers any kind of review or evaluation of research and innovation based on ethical principles. The report will focus on academic traditions of ethics assessment in the field, various types of (national and international) organisations involved in assessment and relevant legislation.

Social sciences are a group of academic disciplines that take human society as the object of their study, attempting to understand human behaviour, relationships and institutions within
society. Traditionally, the group includes sociology, psychology, anthropology, economics, law and political science, although there is no outright consensus on which disciplines should
be included. A large number of subfields have and keep emerging, including human geography, cultural studies, business studies, communication studies, development studies, criminology, etc.

A wide range of ethical issues is discussed in the social sciences. Informed consent, confidentiality, avoiding harm, doing good, relations to peers and research integrity are all part of standard ethical guidelines in many of its disciplines. Even though this list may seem similar to issues in other scientific fields, especially in biomedicine, it is important to acknowledge that the nature and methodologies of social science research imply different kinds of ethical risks, especially concerning research participants. Potential for harm resides less in health and injury risks and rather in psychological distress and the danger of stigmatisation if sensitive private information is disclosed. Social scientists often emphasise the need to reflect the proper nature of these risks in ethical assessment protocols.

Gurzawska, A., & R. Benčin, “Ethics assessment in different fields: Social sciences”, Annex 2.d, Ethical Assessment of Research and Innovation: A Comparative Analysis of Practices and Institutions in the EU and selected other countries, SATORI Deliverable 1.1, June 2015. http://satoriproject.eu/media/2.d-Social-Sciences.pdf

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