--- title: Unlocking sociocultural and community factors for the global adoption of genomic medicine description: Dr Charles Steward PAE lead at Congenica talks about his latest article published in the Orphanet Journal of Rare Diseases image: https://blog.congenica.com/hubfs/Unlocking%20sociocultural%20and%20community%20factors%20for%20the%20global%20adoption%20of%20genomic%20medicine%20(750%20%C3%97%20500%20px)%20(300%20%C3%97%20175%20px)-1.png --- - [Our Customers and Partners](http://www.congenica.com/our-customers) - [Our Product Portfolio](http://www.congenica.com/congenica-products) - **Inherited Diseases** - [Rare Disease](http://www.congenica.com/congenica-rare-disease) - [Inherited Cancer](http://www.congenica.com/congenica-inherited-cancer) - [Prenatal Health](http://www.congenica.com/congenica-prenatal) - [Carrier Screening](http://www.congenica.com/congenica-carrier-screening) - [Neurodevelopmental Disorders](http://www.congenica.com/congenica-neuro) - **Somatic Oncology** - [Solid Tumours](http://www.congenica.com/congenica-oncology) - **Pathogen** - [Pathogen Surveillance](http://www.congenica.com/congenica-pathogen-surveillance) - [Our Services](http://www.congenica.com/congenica-services) - [Clinical Interpretation Services](http://www.congenica.com/congenica-clinical-interpretation-services) - [Professional Services](http://www.congenica.com/professional-services) - [Customer Support](http://www.congenica.com/customer-support) - [Pharma Services](http://www.congenica.com/pharma-services) - Resources - [Publications](http://www.congenica.com/publications) - [Supporting materials](http://www.congenica.com/resources) - [News](https://blog.congenica.com/) - [Events and webinars](http://www.congenica.com/events-webinars) - [About us](http://www.congenica.com) - [Leadership Team](http://www.congenica.com/leadership) - [Quality](http://www.congenica.com/quality) - [Investors](http://www.congenica.com/investors) - [People and Vacancies](http://www.congenica.com/people) - [Contact us](http://www.congenica.com/contact) Login ##### Please select your location and reference genome: [America - GRCh37](https://us-37.congenica.com/) [America - GRCh38](https://us-38.congenica.com/) [Europe, Middle East, Africa - GRCh37](https://eu-37.congenica.com/) [Europe, Middle East, Africa - GRCh38](https://eu-38.congenica.com/) [Overview](https://blog.congenica.com) [Unlocking sociocultural and community factors for the global adoption of genomic medicine](https://blog.congenica.com/unlocking-sociocultural-and-community-factors-for-the-global-adoption-of-genomic-medicine) ![Unlocking sociocultural and community factors for the global adoption of genomic medicine](https://blog.congenica.com/hubfs/Unlocking%20sociocultural%20and%20community%20factors%20for%20the%20global%20adoption%20of%20genomic%20medicine%20(750%20%C3%97%20500%20px)%20(300%20%C3%97%20175%20px)-1.png) Blog Patient Advocacy RareDiseases # Unlocking sociocultural and community factors for the global adoption of genomic medicine 5/17/2022    |    0 min read ## Dr Charles Steward, Patient and Advocacy and Engagement (PAE) lead at Congenica, talks about the latest article that he and members of the PAE Board co-authored and has now published in the Orphanet Journal of Rare Diseases   Advances in genomic medicine are increasingly transforming the diagnosis and treatment of diseases — specifically rare diseases. However, being able to provide such testing to people across the global population, including people living in under-resourced areas and/or underrepresented populations is challenging for various reasons.   Clearly, financial, geographical and clinical considerations are the most obvious barriers to the adoption of genomic medicine. Yet, there are other factors that are not so obvious, including language, communication, religion, emotional barriers and cultural norms. Our article [“Unlocking sociocultural and community factors for the global adoption of genomic medicine”](https://ojrd.biomedcentral.com/articles/10.1186/s13023-022-02328-3), published last week in [Orphanet Journal of Rare Diseases](https://ojrd.biomedcentral.com/)explored these factors. It was authored by a group of clinicians, policy experts, researchers and patient advocates based across five continents.   First author, Lynsey Chediak, Head of Impact & Patient Experience at Rarebase and Congenica Patient and Advocacy and Engagement Advisory (PAE) Board Member said:   “*Despite the many differences that divide our global rare disease community, the experience of living with a rare disease is similar based on one connecting thread: stigma and the resulting sociocultural pressures. Such stigmas are intangible or even indiscernible to a layperson, but are actively inhibiting children and families affected by rare disease from reaching the care that could help with quality of life. We must address such community factors and sociocultural barriers in order to equitably deliver on the promise of genomic medicine and its potential to help all of us living with a rare disease.*   *“It was an honor to collaborate with my co-authors to begin the difficult task of articulating how sociocultural and community factors prevent genomic medicine from reaching our global rare disease community. Many thanks to Congenica for supporting the exploration of this critically important topic”.*   Senior author, Dr Charles Steward, Patient Advocacy & Engagement (PAE) lead at Congenica said:   *“As part of our Patient Advocacy and Engagement focus, we are investigating the barriers behind the adoption of genomic medicine around the world. By using the lens of rare diseases to focus on barriers to the global adoption of genomic medicine, we looked to complement the existing literature on barriers to diversity, equity and inclusion with specific focusses on socio-cultural aspects, and in particular stigma, as well as the critical role of patient advocacy plays. Furthermore, we looked at specific child health aspects and how they point towards opportunities to build on specific infrastructures. Collectively, our article also resonates with themes underlying the [United Nations Resolution](https://digitallibrary.un.org/record/3947524?ln=en)[on Addressing the Challenges of Persons Living with a Rare Disease and their families](https://digitallibrary.un.org/record/3947524?ln=en).”*   **“Unlocking sociocultural and community factors for the global adoption of genomic medicine”** is an initiative by [Congenica’s Patient Advocacy and Engagement team](https://www.congenica.com/patients/)to understand more about the global barriers that exist to the adoption of genomic medicine. See articles relating to our work in [Hong Kong](https://blog.congenica.com/the-hong-kong-genome-project-benefits-to-patients)and [Malaysia](https://blog.congenica.com/global-barriers-to-genomics)for more of our international advocacy collaborations.   --- ### Related articles ![The Road to Diagnosis: How Genetics Transforms the Lives of Rare Disease Patients](https://blog.congenica.com/hs-fs/hubfs/Untitled%20design%20(8).png?width=320&height=192&name=Untitled%20design%20(8).png) 2/24/2023 #### [The Road to Diagnosis: How Genetics Transforms the Lives of Rare Disease Patients](https://blog.congenica.com/the-road-to-diagnosis-how-genetics-transforms-the-lives-of-rare-disease-patients) In recognition of Rare Disease Day, Congenica looks at the importance of a genetic diagnosis for patients and asks, what's next for rare disease? ![What’s it like to be a woman working in science?](https://blog.congenica.com/hs-fs/hubfs/Since%202016%2c%20the%20number%20of%20women%20working%20in%20STEM%20fields%20in%20the%20UK%20has%20increased%20by%20216%2c552%2c%20taking%20the%20total%20number%20over%20the%201%20million%20mark%20for%20the%20first%20time.%20Women%20now%20make%20up%2024%25%20of%20the%20STEM%20workforce%20i%20(2).png?width=320&height=192&name=Since%202016%2c%20the%20number%20of%20women%20working%20in%20STEM%20fields%20in%20the%20UK%20has%20increased%20by%20216%2c552%2c%20taking%20the%20total%20number%20over%20the%201%20million%20mark%20for%20the%20first%20time.%20Women%20now%20make%20up%2024%25%20of%20the%20STEM%20workforce%20i%20(2).png) 2/10/2023 #### [What’s it like to be a woman working in science?](https://blog.congenica.com/whats-it-like-to-be-a-woman-working-in-science) For International Day of Women and Girls in Science, we talk to three women at Congenica about their experiences of working in STEM. ![Professor Matthew Hurles discusses the Deciphering Developmental Disorders study](https://blog.congenica.com/hs-fs/hubfs/Deciphering%20Developmental%20Disorders%20(1)-1.png?width=320&height=192&name=Deciphering%20Developmental%20Disorders%20(1)-1.png) 2/8/2023 #### [Professor Matthew Hurles discusses the Deciphering Developmental Disorders study](https://blog.congenica.com/professor-matthew-hurles-discusses-the-deciphering-developmental-disorders-study) Professor Matthew Hurles, project lead for DDD study and Congenica founder, discsuses his projects, advancements in data analysis and interpretation ##### Congenica is available as a CE Marked IVD clinical decision support platform for clinical diagnostic use for inherited genetic disorders in the UK and EU, Iceland, Lichtenstein, Norway, Switzerland and Turkey. 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