FamGene, designed as a representation of NHS Genomic Medicine Service, is a physical-digital combined service that aims to support genetic test receivers to better plan for themselves, the whole family, and their next generation’s genetic predispositions.
Jihyeon Park
Shang Wu
Suhyeon Jo
Yinong Xin
Yiwen Qu
NHS Imperial Healthcare Trust
Genetic testing as a family practice
Genetic testing is the key to preventative treatment and personalised care. For the next few years, the NHS has a long-term goal to popularise genetic testing within the UK in order to implement advanced medical care and improve the health conditions of all the citizens. To help the NHS achieving this goal, we collaborate with NHS Genomic in this project to propose a service that can help test receivers to better plan for themselves, the whole family, and their next generation’s genetic predispositions. Our service recognizes genetic testing as a family practice. By supporting on family medical history collection, result delivery, and intergenerational risk management, our service aims to allow the whole family to be prepared and empowered by genetic testing.
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What do genetic test receivers care about?
From the interviews with test receivers and genetic counsellors, we have got 3 insights from them. Firstly, it is hard to gather full-scale family medical history. Secondly, it is difficult to interpret the result accurately and get further advice for prevention. Thirdly, there is a remaining concern for the next generations, given that many don’t know what to prepare for their children. As for the genetic counsellor side, there is a need to deliver rational information and ensure people understand the result clearly. FamGene is mainly targeting at test receivers with their underaged children who have a genetic predisposition. There are largely two ways in inheriting genetic diseases to their next generations. The genetic disease could develop when children grow up, examples include breast cancer and ovarian cancer, whereas, genetic diseases such as Charcot-Marie-Tooth disease, and Tourette syndrome can manifest from an early age.

Genetic test assistance for family

At the heart of FamGene is our digital platform that helps families accurately gather and maintain family health medical records, by providing secure and easy-access online medical archives and a physical kit for taking care paper works. On top of that, is the family tree that’s generated through interconnected family networks, information can be sent and shared to family and professionals with full autonomy. Famgene can also assist our patients after they finish the genetic testing process, where the most overwhelming situations often occur, through easy to understand result and information delivery. Real-time risk analysis and further support are provided in digestible formats, furthermore, result delivery phone call with counsellor will be recorded and available upon request. Meanwhile, a web-based portal for genetic counsellor can allow both counsellors and patients to have effective and responsive participation in the whole testing experience.

Children’s risk management

FamGene also aims to step in early and help patients become more informed about their child's risks. From pregnancy preparation to child’s risk management, FamGene provides customized services according to different life stages. Parents can check their children’s potential genetic predisposition based on their own test results. Especially for children who are under-risk, their symptoms and behaviours can be logged in our Child’s Dairy, which is available on our digital platform for parents. Therefore, a better communication with professionals regarding children's further treatment and prevention can be assured. When their children become a grown-up, FamGene will convert their archive into an independent user, so they can be accompanied along the journey of life.

FamGene's vision
FamGene aims to prepare and empower multiple generations in the family when they are facing genetic challenges. By using FamGene, genetic test receivers and their offsprings can collect, store, and access family medical history more conveniently, enabling more accurate NHS genetic counsellings. After the test, the platform provides test receivers with more real-time and practical information about their testing results. With this information, they can have a better picture of the next steps and their anxieties can be reduced. Moreover, FamGene also emphasises on managing the next generation’s genetic predispositions from an early stage. Early attention and interventions allow the youngs in the family to enjoy better and more prepared lives.
Route to the real world
FamGene will benefit stakeholders involved in genetic testing, and help the NHS better achieve its long-term goal of popularising genomic services. To do that, FamGene will make use of NHS's resources and technology to provide users with reliable information and data protection. Following the trend of NHS digitalisation, FamGene look forward to joint development with medical management platforms such as CIE, tools such as CanRisk and PLSD will also assist in the analysis of test results. In return, FamGene will provide medical data to all platforms with the user's permission for more accurate analysis and broader medical research. In terms of services development, we tend to use HTML 5 language that does not need to be programmed separately for mobile devices, and Collection Kit will be reconsidered based on the budget. For marketing, FamGene will be made known to those in need mainly through GP and NHS Letter.
special thanks
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