Sharing Research Results and Benefit-Sharing Updates with Residents of Norfolk Island
For six months in 2021 and 2022 the Genomics Research Centre, led by myself, returned to Norfolk Island to continue the 20-year work of the Norfolk Island Health Study, in collaboration with Variant Bio. The study has been examining the genetic and environmental influences on the health of Norfolk Islanders to help understand the island’s unique health landscape.
The visit in 2021 and 2022 was very successful, and included the important work of community consultation with residents of Norfolk Island. The research team and I are very grateful for the hundreds of Islanders who volunteered to participate in the study once again. We had a great response from the community with 668 adults participating, including 358 new participants — the vast majority of whom have family ties to the island or are the next generation from those who participated in the original study.
I then visited Norfolk Island again in early May this year to meet with island residents to discuss the progress of the study and the outcomes of Variant Bio’s related benefit-sharing program. Through this program, Variant Bio distributed grants for a variety of initiatives on the island, including the development of a Norfolk dictionary led by the Norfolk Island Council of Elders, a street art project led by the Polynesian Foremothers, a natural history preservation project spearheaded by the Norfolk Island Flora & Fauna Society, efforts against an invasive plant species by the Norfolk Island Conservation Volunteers, a picnic area project at the Rotary Club of Norfolk Island, and improved infrastructure for a local food pantry.
When my team completed the island collections at the end of April 2022, we published a piece in the Norfolk Islander thanking participants for their time, and noting that “All the samples are now back in our laboratory, and we aim to have preliminary results generated and sent out soon.” One year on from our return to Queensland University of Technology (QUT), the research team and I have been hard at work to progress the study. Initial results from the blood tests taken as part of the study have been returned to study participants and we have since been working on genetic aspects of the research. By April 2023, we finalised the work needed to obtain complete genetic information for all participants in the study, past and present.
Now equipped with this information, our research team at QUT and Variant Bio are beginning the process of searching through this huge volume of data to uncover the most significant genes involved in several health conditions on the island, with a special focus on kidney disease. Once the most interesting genes are identified, we will continue on to more specialised laboratory work to look not only at the makeup of the genes, but how the activity of the genes is affected by health conditions. The team and I are hopeful that the knowledge obtained from this analysis will provide significant new insights into how these conditions develop.
