Project Activities

Evidence Review

A scoping review of the existing evidence base has been completed in relation to the ethical, legal and social issues and implications (ELSI) of genomic technologies for people who identify as having a lived experience of disability.

Click here to access a short summary of this scoping review.

Click here for an Easy Read summary of this scoping review.

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Survey

Between March and May 2023, the “We Need to Talk” project disseminated an anonymous survey about the ethical, legal, and social implications of genomic technologies for people with disability. 

  • A good response was received (over 100 respondents), with people with a lived experience of disability, parents/carers of people with disability, health and medical professionals, and genomics researchers responding to the survey and providing their views and opinions.
  • Several people with intellectual and cognitive disabilities also took part by expressing their views via an interview with a member of the research team.
  • Lastly, a small portion of members from the public responded to the survey however the research team is currently collaborating with a market research provider to amass a stratified sample of the Australian population to gather a general public view on this important topic.

The research team is currently collating the findings from the survey, and summary findings in multiple and accessible formats will be added to this page soon.

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Delphi Study

Between September 2022 and June 2023, the "We Need to Talk" project conducted a Delphi study to gather a deeper understanding of some of the ethical, legal, and social implications of genomic technologies for people with disabilities identified via the Evidence Review. A Delphi study identifies a set of experts to respond to a series of surveys across several rounds of data collection in an effort to find a consensus view on a particular topic.

The Delphi study for the “We Need to Talk” project involved:

  • Eighteen participants, identified as ‘experts’ by the research team, which included people with a lived experience of disability, parents/carers of people with disability, genomics health professionals, genomics educators, and genomics researchers.
  • In Round 1, the 18 participants completed an online survey that contained 21 rating scale questions. Participants were also provided the opportunity to provide a written or audio response to elaborate on their rating scale responses.
  • In Round 2, the 18 participants responded to another online survey, which contained 11 rating scale questions. These questions aimed to gather more insights into some of the ethical, legal, and social implications where a consensus view was not reached in Round 1. Again, participants were able to provide a written or audio response to elaborate on their rating scale responses.

The research team is currently collating the findings from the Delphi study, and summary findings in multiple and accessible formats will be added to this page soon.

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National Roundtables

Image from our Brisbane Roundtable
Image from our Brisbane Roundtable

In July 2023, the “We Need to Talk” project conducted two Roundtables (one in Brisbane and one in Melbourne) to enable a deeper in-person exploration of the ethical, legal, and social implications of genomic technologies for people with disability. The aim of the Roundtables was to capture the variety of perspectives and experiences of multiple stakeholders when it comes to the topic of genomics and disability.

This final stage of the “We Need to Talk” project brought together 44 participants from multiple stakeholder groups including people with a lived experience of disability, family members of people with disability, genomics and other health professionals, genomics researchers, and other stakeholders who have a personal and/or professional interest in disability and/or genomic technologies.

Image from our Melbourne Roundtable
Image from our Melbourne Roundtable

The agenda for the Roundtables consisted of the presentation of preliminary findings from the “We Need to Talk” project, information videos about genomic technologies, human rights and bioethics, a panel discussion with several experts, and group discussions to discuss topics and issues of relevance. 

The videos presented at the Roundtables are now available online to watch. 

The research team is currently collating the findings from the Roundtables, and the information and feedback gathered from the Roundtables will be used to contribute to the development of a white paper on the ethical, legal, and social implications of genomic technologies for people with disability, guidelines for research and practice, and other relevant resources. Summary findings from the Roundtables in multiple and accessible formats will be added to this page soon.

We Need To Talk Slide

 

 

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