Listening to genetics consumers and the community
Genetic Counselling has established the first ‘Consumer and Community Advisory Group’, within the Graduate School of Health, to help shape the research strategy and Master of Genetic Counselling curriculum.
The Genetic Counselling Consumer and Community Advisory Group has been established to help shape the newly developing research strategy and the Master of Genetic Counselling teaching and learning curriculum.
This initiative brings the voices of genetic counselling consumers into the classroom. Meaningful and authentic engagement with consumers and community members also ensures research is relevant and client-centred.
Learning to work alongside and be accountable to such groups is a vital skill for novice researchers, and Genetic Counselling students from the Graduate School of Health are fortunate to have access to this wealth of knowledge and lived experience.
The first meeting of the Group was held on 18th November, chaired by Dr Chris Jacobs of UTS Genetic Counselling. The event gave members the opportunity to meet face-to-face, get to know each other and develop their Terms of Reference for future work.
“We are extremely privileged to have such an enthusiastic, generous and diverse group of people who are willing to work with us in this way. This goes to the heart of the UTS learning, teaching, and research approach – being connected with and supported by community members,” says Dr Chris Jacobs, Chair of the Group.
The establishment of the Group strengthens UTS Genetic Counselling’s alignment with the UTS 2027 Strategy – it values relationships, input from industry and community members and finding new ways of working together to educate students.
We are extremely privileged to have such an enthusiastic, generous and diverse group of people who are willing to work with us in this way. This goes to the heart of the UTS learning, teaching, and research approach – being connected with and supported by community members.
Dr Chris Jacobs
Chair of Genetic Counselling Consumer and Community Advisory Group
“Genetic Alliance Australia is delighted to be included in the Genetic Counselling Consumer and Community Advisory Group (that) will contribute to the training of Australasia’s future Genetic Counsellors,” says Jenny Rollo from Genetic Alliance Australia.
This is also the direction set at a national level ensuring research is connected with and serves the people and communities it focuses on. The purpose of the Group aligns with the NHMRC Guidelines:
“Consumer and community involvement is about research being carried out with or by consumers and community members rather than to, about or for them.” (NHMRC Statement on Consumer and Community Involvement in Health and Medical Research, 2016).
The Genetic Counselling Consumer and Community Advisory Group will enable an authentic consumer and community contribution within our program.
Members of the group includes an Aboriginal Elder, an Indigenous Health representative, the LGBTQI+ community and a range of non-government organisations that support people and families living with inherited genetic conditions (i.e. Ovarian Cancer Australia, SANDS (Miscarriage, Stillborn and Newborn Death Support), Fragile X Association of Australia, Syndromes Without A Name (SWAN), Genetic Alliance Australia) some of who are involved in research in their own areas of expertise.
The Group hopes to expand the membership to include consumer representation from cardiac genetics and other hereditary cancer groups in the future.
“Whilst the Group cannot represent everybody, we aim to utilise the expertise and relationships held by the members, to gain wider access to the other groups and populations they have relationships with. We are very excited about the potential,” says Dr Chris Jacobs.