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Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

Australian Mental Health Consumer and Carer Perspectives on Ethics in Adult Mental Health Research (Papers: Alyssa R. Morse, et al | April 2019)0

Posted by Admin in on May 5, 2019
 

Abstract
Barriers to research arise when national ethical guidelines governing the inclusion of consumers in mental health research are implemented at the local level. Equivalent guidelines for research involving carers are not available. A social science investigation of Australian mental health consumer and carer perspectives on research ethics procedures was conducted in two interlinked stages: (a) a discussion forum with consumers, carers, and lived-experience researchers and (b) in-depth interviews with consumers and carers. Data collection and analysis drew strongly on methodological features of grounded theory. Privacy, confidentiality, and stigmatizing ethics procedures were key issues for consumer and carer participants. Recommendations for research practice include the following: considering the impact of information sharing on participants’ relationships and adopting individual-focused approaches to managing research risks.

Keywords:
caregiver; carer involvement; consumer involvement; mental health; research ethics; service user

Morse, A. R., Forbes, O., Jones, B. A., Gulliver, A., & Banfield, M. (2019). Australian Mental Health Consumer and Carer Perspectives on Ethics in Adult Mental Health Research. Journal of Empirical Research on Human Research Ethics. https://doi.org/10.1177/1556264619844396
Publisher: https://journals.sagepub.com/doi/abs/10.1177/1556264619844396

Research: Data Protection Impact Assessment (DPIA) (Guidance: SOAS UL | November 2018)0

Posted by Admin in on May 2, 2019
 

Table of Contents
Research: Data Protection Impact Assessment (DPIA) …. 1
1. Requirement …. 3
2. The Nature of the DPIA …. 3
3. Screening Evaluation …. 4
4. Content and scope …. 4
5. Process …. 5
6. Unmitigated High-Risks …. 5
Appendix 1: Screening Evaluation …. 7
Appendix 2: Data Protection Impact Assessment (DPIA) Template ….8

SOAS University of London’s Research Office has produced a guidance document: Research Data Protection Impact Assessment that is part of the institution’s overall Research Ethics process. It is formulated in line with SOAS’ corporate approach to data and privacy.  Also included below is a trove of other privacy items.

1. Requirement
1.1 The Data Protection Impact Assessment (DPIA) is a requirement that is set out in both the General Data Protection Regulation (GDPR) and the Data Protection Act (DPA) 2018.1
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1.2 The Research Office has prepared the guide set out here as it relates to Research and it forms part of the overall Research Ethics process. It is formulated in line with SOAS’ corporate approach as set out in the Data Protection Impact Assessment Guide.
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Guidance for Researchers on the Implications of the General Data Protection Regulation and the Data Protection Act 2018 (Guidance: UCL | May 2018)0

Posted by Admin in on April 30, 2019
 

Introduction
This guidance note has been compiled to provide an overview of data protection key points for researchers, in line with the General Data Protection Regulation (GDPR) and the new UK Data Protection Act 2018. When referring to both, this guidance note will use the term ‘new data protection legislation’.

This document was last updated on 24 May 2018. It may be updated further as relevant guidance on the issues raised is published by the UK Information Commissioner’s Office (ICO).

A. Scope
This guidance applies to researchers who are processing personal data, i.e. information relating to an identified or identifiable living person. Note that ‘processing’ means any operation – collecting, storing, using, transferring, disclosing or destroying – performed on personal data.

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‘They’re not property’: the people who want their ancestors back from British museums – The Guardian (David Shariatmadari | Apr 2019)0

Posted by Admin in on April 25, 2019
 

The remains of indigenous people from all over the world have ended up in various British institutions. Why do their descendants have so much trouble getting them returned?

In November 2011, Ned David travelled the 8,500 miles from his home on Thursday Island, off the tip of Queensland, Australia, to the Natural History Museum in London. He was on a mission to collect the bones of his ancestors. The material included skulls, a jawbone and other fragments from the Torres Strait archipelago, collected by Europeans in the 19th century as scientific specimens and anthropological curios. The museum had agreed that the remains should be given back to their “originating community”, and it was finally time to take them home.

A private ceremony was held – David is reluctant to share the details with outsiders – and afterwards he and his fellow islanders went back to their hotel. But the mood wasn’t celebratory. “Mate,” he says, “it was sombre with a capital ‘S’. There was sort of this eerie feeling after all the hoo-ha and the media, and whatever. We sat around and no one spoke. I think it took a long time to realise the significance of what we had done.”

The handover had followed a consultation in which islanders were asked what they wanted to do about body parts that were sitting in collections on the other side of the world. Feelings ran high. “It’s probably one of those rare exercises we have done as a nation in which we were in total agreement with each other,” says David, who chairs the Gur A Baradharaw Kod, or Torres Strait Sea and Land council. “As one elder said: ‘How would you feel knowing that one of your family members is in some strange place and, more importantly, hasn’t been afforded the right burial?’ That has an impact on the psyche of a group.”

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