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Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

Human Genome Diversity: ethics and practice in Australia (Paper: Pellekaan van Holst )0

Posted by Admin in on May 31, 2015
 

PAPERS: PELLEKAAN S, H. (2011). Human Genome Diversity: Ethics and Practice in Australia. Human evolution, 26(3-4), 141-152.

ABSTRACT
Researchers who propose projects about the human past frequently fail to distinguish between scientific value and the impact of both the proposal and the possible outcome for participant groups. It is only in recent years, and still in relatively few cases, that Aboriginal Australians have been directly involved in projects about themselves. The legacy of previous research experiences is a lingering distrust of ‘white’ researchers who visit communities briefly, take material/information, publish papers, and are rarely seen again. This distrust is understandable but in turn becomes a barrier which many well-intentioned researchers are unable or unwilling to overcome. The expectations of the scientific community, particularly in the field of molecular biology, simply do not make allowances in terms of time or funding to build a trusting relationship between the researchers and the researched. Sensitivity to indigenous rights and expectations with regard to scientific research brings obligations to scientific investigators with which few are well prepared to deal. The direct involvement of indigenous people in research about themselves is essential to the development of trusting working relationships likely to result in valuable outcomes for all participants and increased opportunities for ongoing research. Well negotiated, co-operative research can provide information of value to both scientific investigators and local participants, but adequate and ongoing consultation, as well as the return of results to the communities in an accurate and appropriate form must be part of research strategy. For example, information about mitochondrial DNA studies may assist Indigenous Australian people, whose families were dispersed during colonisation by Europeans, to trace links with the past, find ‘stolen children’ and by association with other anthropological, linguistic and archaeological data, repossess some remnants of traditional knowledge, but researchers must ensure that participants have a realistic understanding of the limitations of the research.

U.S. Office for Human Research Protections (OHRP)0

Posted by Admin in on May 30, 2015
 

“The Office for Human Research Protections (OHRP) provides leadership in the protection of the rights, welfare, and wellbeing of subjects involved in research conducted or supported by the U.S. Department of Health and Human Services (HHS). OHRP helps ensure this by providing clarification and guidance, developing educational programs and materials, maintaining regulatory oversight, and providing advice on ethical and regulatory issues in biomedical and social-behavioral research.”

The information available from the OHRP web site includes:

  • fact sheets;
  • regulations;
  • policies and guidelines;
  • education;
  • resources;
  • news; and
  • archived material.

University of the South Pacific’s HUMAN RESEARCH ETHICS: A Handbook for USP Researchers0

Posted by Admin in on May 30, 2015
 

“This Handbook explains the values and principles that guide processes and practices of research involving human participants at the University of the South Pacific.

“The ethical values and principles described here apply to all University activities, to all its staff and student researchers including those visiting for short periods, and to any research agreements or partnerships that the University establishes.

“The University’s human ethics will be compliant with the laws of individual University member states, particularly in relation to privacy, confidentiality, ownership, intellectual property requirements, research permit requirements and human rights.”

Understanding Consent in Research Involving Children: The ethical Issues. A Handbook for Human Research Ethics Committees and Researchers0

Posted by Admin in on May 30, 2015
 

HANDBOOK

This excellent resource was written by Dr Merle Spriggs, Children’s Bioethics Centre with the following co-investigators: Associate Professor Lynn Gillam; Professor Colin Thomson; Associate Professor Justin Oakley.

“This handbook together with a project website is an educational resource developed for Human Research Ethics Committees (HRECs) and researchers. The questions in this handbook are based on actual issues of concern expressed in key informant interviews with members of HRECs who review research involving children and young people and researchers who conduct that research.2 The questions reflect ethical issues that are being encountered by researchers and HREC members and the concerns on which they seek further guidance.”

PDF copy of the handbook

CASE STUDIES

The case studies, questions and comments for A Handbook for Human Research Ethics Committees and Researchers.

PDF copy of the case studies

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