Consent is a crucial early stage in the genetic and genomic testing process. But what if once a person agrees to their information being used for research they change their mind?

Welcome to the world of dynamic consent, where a research participant can control the use of their data at different points throughout a study.

Dynamic consent, rather than broad consent, is a relatively recent phenomenon, and one that has been given impetus by an Australian Genomics innovation featured in the latest edition of the European Journal of Human Genetics.

Australian Genomics designed and developed a web-based application that enables research participants to engage more with a research program, update their personal details and choices along the way, follow their progress through the study, and contact the researchers.

CTRL (Control), as it is known, was developed to maintain an open communication channel with research participants so they can continue to think about their choices and have a deeper understanding of the research in which they are taking part.

Informed consent throws up unique challenges in the context of genomic medicine: “Consent must cover the potential for unexpected findings, family implications, health information privacy and data sharing for further research,” the paper says.

The stepwise process (of dynamic consent) moves away from the block of information with one final decision, instead breaking down important points into small decisions; participants can absorb simple statements, checking them off as they go.”

The project, led by Dr Matilda Haas, set out to create a prototype platform that was flexible, adaptable and scalable, allowing it to be easily applied to other research projects.

And it has: the $20 million Mackenzie’s Mission study is using it to recruit thousands of Australians for reproductive carrier screening.

Now that we have established an agreement for sharing CTRL with other research programs, we expect to see more research groups adopting the tool and adapting it for their own use,” Dr Haas said.

The paper is available here.