The resources are aimed at adults with an inherited condition that affects appearance who are thinking about having a baby. It includes information about genetic counselling, what genetic testing involves, and the different reproductive options that may be available to you. It also provides information about where you can access further advice and support.
It recognises that decisions about having children can involve a range of personal, emotional and practical considerations, and that there is no single right choice.
It is designed to provide information and signposting rather than advise people about what decision they should make. If you are interested in translating the resources into another language, please contact us at CAR@uwe.ac.uk to discuss this.
You can access the resources here:
- Understanding your options
- Understanding genetic testing
- A short animation about the experiences of individuals exploring reproductive decision-making.
“The research has validated my experiences and feelings and reduced the isolation.”
Person with Treacher Collins
Podcast
You can hear more about this resource on this episode of the Appearance Matters podcast.
The Research
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The resources are based on research with people who have genetic conditions that affect appearance and professionals working in genetic counselling.
The STAR project involved listening to their experiences and perspectives to better understand the questions, concerns and support needs that can arise when thinking about having children who might inherit a visible difference. Their experiences helped us develop resources to help others understand their options, find relevant information and access support.
Publications
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Montgomery, K., & Harcourt, D. (2026). Reproductive decision-making in the context of inheritable conditions that affect appearance: Lived experiences and perspectives. Journal of Community Genetics, 17(4), 92. https://doi.org/10.1007/s12687-026-00926-3
Montgomery, K., & Harcourt, D. (2026). Appearance-related stigma and its implications for genetic counselling practice. Journal of Community Genetics, 17(3), 70. https://doi.org/10.1007/s12687-026-00905-8
The Team
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Kerry Montgomery, Diana Harcourt, Arti Patel (Senior Genetics Associate, North Thames Genomics Medicine Service)
Acknowledgements
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Thank you to the VTCT Foundation for funding this research. Thank you to our wonderful Research Advisory Groups. Arti Patel and Dr Sarah Wynn (Unique) for providing their knowledge and feedback. We would also like to thank members of the Appearance Collective charities for supporting this work.
