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Section 3 (Chapters 3.1 & 3.5), Glossary and Revisions to Section 5 National Statement on Ethical Conduct in Human Research, 2007 submission

ID: 
61
This submission reflects the views of
Organisation Name: 
Federation of Ethnic Communities' Councils of Australia
Personal Details
Specific Comments
Comments: 
General Comments
Comments: 

Australia has a growing multicultural population: almost a quarter of Australia's population was born overseas and 43 per cent of people have at least one overseas-born parent.1 It is likely that the 2016 Census will show a further increase in these population groups. Given the diversity of Australia, the research mechanisms must be proportionately representative of people from diverse backgrounds.

Cultural sensitivity in research
Poor health literacy among some of the CALD community members can be a barrier in engaging people from CALD backgrounds in health research. The researchers also need to be mindful of the cultural understandings and perspectives about certain health conditions, especially those relating to reproductive health, mental health and ageing related cognitive impairments and the like. The researchers must demonstrate the capacity of the research in respectful engagement with CALD communities, their values and cultures. While it is important to understand the values of the different cultures in research, it is also important to appreciate that all individuals belonging to the culture may or may not share all those
values.2

The explanatory note states that the design and conduct of a recruitment strategy must be respectful of potential participants, facilitate voluntary participation, and have due regard for their welfare, culture, traditions and beliefs.3 Engaging communities in research through trusted channels is vital in certain CALD communities. When recruiting people for research, it may be useful to approach the community or religious leaders prior to recruiting individuals from such communities depending on the type of research.

The manner and process for obtaining consent must be respectful and have the objective of facilitating the valid consent of potential participants. Obtaining consent may be a component of broader processes of consultation, engagement and negotiation, as in the case of research involving Aboriginal and Torres Strait Islander Peoples.4 Concerns raised in relation to obtaining consent from Aboriginal and Torres Strait Islander communities are also applicable to some CALD communities. Understanding the complexities in relation to obtaining or withdrawing consent of people from CALD backgrounds and respecting their
cultural practices and norms is important in the research process. For example: in certain cultures decisions in relation to such engagements are made by the family as a collective or by an adult male decision maker. Such nuances must be given adequate consideration when working with CALD community members.

Lack of understanding about the cultural and linguistic background on the part of the researcher may result in creating mistrust, misinterpreting data or otherwise limit quality or may overlook a potentially important benefit of research. Data collection mechanisms used in research must be complex enough to capture data on cultural and linguistic background of the individuals beyond the country of birth and language spoken at home for example; it should include people whose parents are from a non-English speaking country and who selfidentify as coming from a CALD background based on ancestry.

The purpose of the research, management and use of data as well as confidentiality of gathered data must be made clear to the participants of the research. This is especially important for research participants from CALD backgrounds because of cultural and social sensitivities related to many types of research such as mental health, cognitive impairments and sexual and reproductive health. It is also important to communicate the research findings or results to the participants. Researchers may need to obtain the consent of the research participants in relation to the mode and time of communication of the research findings.

Language needs of people from CALD backgrounds
FECCA is pleased to note the emphasis on use of simple language, and the use of respectful and appropriate language in conducting research.5 However, the explanatory materials do not delve into CALD backgrounds and how researchers can accommodate the language needs of the participants. FECCA's Australia's Growing Linguistic Diversity report stated that more than 300 languages are spoken by the Australian population and that languages spoken by an individual form an integral part of their identity, and influence their ability and capacity to engage in social and economic life.6

Provision of language services is integral in ensuring that all research participants have an equitable opportunity to engage in the research. The researchers need to be aware of mechanisms to obtain language services through appropriate and ethical means. Use of family or community members as interpreters may compromise the quality of the information. Thus, researchers must be able to use professional interpreters and the interpreter and translation cost must be built into the research plan. In certain communities, the research participants may prefer to have a family member as their interpreter. The choice of an interpreter when participating in the research must be the decision of the participant.

 

1 Australian Bureau of Statistics, 2011 Census reveals one in four Australians is born overseas, 2012,
accessed at http://abs.gov.au/websitedbs/censushome.nsf/home/CO-59

2 See further: FECCA, Outcomes Document, National Roundtable on research in ageing and aged
care for older people from culturally and linguistically diverse backgrounds, (July 2016), accessible at:
http://fecca.org.au/wp-content/uploads/2016/06/FECCA-NARI-Outcome-Docume...
3 NHMRC, Public Consultation on Section 3, Glossary and Revision to Section 5: National Statement
on Ethical Conduct in Human Research, 2007, (November 2016), p 10.
4 Ibid 13.

5 NHMRC, Public Consultation on Section 3, Glossary and Revision to Section 5: National Statement
on Ethical Conduct in Human Research, 2007, (November 2016), pp 10 and 13.
6 FECCA, Australia's Growing Linguistic Diversity: An opportunity for a strategic approach to language
services policy and practice, (September 2016), p.5, accessible at: http://fecca.org.au/wpcontent/
uploads/2016/09/feccalanguagesreport.pdf

Page reviewed: 10 July, 2018