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Aboriginal genome analysis comes to grips with ethics – Nature (Ewen Callaway | September 2011)0

Posted by Admin in on May 12, 2019
 

Sequencing effort provides a model for future studies of museum samples.

En route from Sydney to Perth, Australia, in the early 1920s, British ethnologist Alfred Cort Haddon acquired a tuft of human hair from a young Aboriginal man. He added it to his sizeable collection of hair from people living around the world.

Ninety years later, those locks have yielded the first complete genome sequence of an Aboriginal Australian, and provided clues about the timing of human migrations from Africa to Asia1 (see ‘Early human explorers charted a bold course’). The work has also underscored the bioethical dilemmas involved in plumbing the genomes of indigenous populations — especially when the DNA comes from an archived specimen such as Haddon’s. “To be sequencing DNA from the hair of a deceased indigenous person is uncharted ethical territory,” says Emma Kowal, a cultural anthropologist at the University of Melbourne.

The genome project, led by Eske Willerslev at the University of Copenhagen, received approval for the work from a group that represents Aboriginals in the region in which the man probably lived. But some scientists are jittery about how others in the Aboriginal community might receive the project, and worry that it could set back efforts to engage Aboriginals in genetic research. “In a sense, every Aboriginal Australian has had something about themselves revealed to the world without their consent,” says Hank Greely, who directs the Center for Law and the Biosciences at Stanford University in California.

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Friday afternoon’s funny – Faster recruitment0

Posted by Admin in on May 10, 2019
 

 

Cartoon by Don Mayne www.researchcartoons.com

A recruitment method might be faster and more effective (e.g. If 6 colleagues work together).  But is it superior and ethically superior?  If that depends on who you ask, then you probably should conclude it isn’t.

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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