Faculty of Humanities, Arts and Social Sciences

We Need to Talk: About the project

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For an Easy Read summary of the “We Need to Talk” project, please click here.

Scientific and medical developments in genomics are rapidly advancing with potentially profound impacts at an individual and societal level. A challenge to research in the field, medical genetics has often been regarded with caution by society in general due to its historical association with eugenics.

This is particularly true for some parts of the disability community who have been concerned about the ethical and social repercussions of genetic research and genetic testing.

For individuals with disability, advances in genomics can fundamentally alter their understanding of their condition, their self-identity, their perceived value in society and the likelihood that other individuals with the same condition will exist in the future.

When scientific advances, such as genomics and genomic medicine, have existential impacts, it is imperative that affected individuals be centrally involved in deciding on their future direction, and articulating all possible ethical, legal and social implications associated with the advancement.

To understand the full impact of genomics on the lives of people with disabilities, it is similarly beneficial for scientists, clinicians and policy makers to be included in these discussions.

A shared understanding through dialogue is needed to bring together these critical perspectives to the understanding the ethical, legal and social issues and implications (ELSI) of genomics.

A team of multidisciplinary researchers from The University of Queensland has embarked on the “We Need to Talk” project, a collaborative research project focused on identifying and understanding the ELSI of genomic technologies. 

The main goal of the project is to ascertain the views of people with disabilities and their families and the views of health professionals, policy makers and researchers in a shared space for dialogue regarding genomic technologies and their implications for people with disability.

Using co-design methodology, the project includes people with disability, key stakeholders and the research team working collaboratively to:

  1. Identify practical solutions to key issues 
  2. Create resources to support disability-informed and evidence -based clinical practice.

In brief, the project involves the following phases:

  1. A review of the research literature to inform the project.
  2. A large-scale survey to identify and explore ELSI of relevance to people with disability and all key stakeholder groups.
  3. A Delphi study involving people with disability and all key stakeholder groups to identify (via a process of consensus) priority ELSI and strategies, solutions and recommendations for future research, policy, and practice.
  4. A series of National Roundtables attended by people with disabilities and representatives from all key stakeholder groups to explore and confirm the findings from all previous research activities.
  5. The development of resources (e.g., documents, videos, webpages) for people with disability, their families and medical and health professionals regarding genomics and disability. These resources will be co-designed by people with disabilities.

Chief Investigators

Professor Karen Nankervis

Professor Karen Nankervis combines her health practitioner background with her work as an educator, researcher, and policy leader in the disability sector. Her interests include co-design and quality supports for people with complex disability support needs.

 

Associate Professor Rhonda Faragher

Associate Professor Rhonda Faragher undertakes research in disability studies with a focus on education and intellectual and developmental disability. She has an adult daughter with Down syndrome.

 

Postdoctoral Research Fellow

Dr Maria Vassos

Dr Maria Vassos is a psychologist and disability researcher with a track record of industry engagement and knowledge translation. Her research interests include work-related issues for disability professionals, positive behavioural support, and parent stress.

Other team members

Collaboration and co-design approaches have been embedded into every aspect of the “We Need to Talk” project thus far. Examples include:

  • Having a Project Advisory Group to oversee the activities of the project and provide guidance and assistance as needed. The Project Advisory Group is made of members of the research team, people with a lived experience of disability, genomics professionals and representatives from disability peak bodies.
  • Engaging people with a lived experience of disability to assist in the development of research materials for this project such as Easy Read documents, interview schedules and surveys.

Much of this collaborative work has been undertaken virtually due to the COVID-19 pandemic. The research team would like to thank the people with lived experience of disability who have worked alongside us so far, and for being open to working with us in new and innovative ways.