{"podcast":{"title":"Behind the Genes","slug":"behind-the-genes-3509739","podcast_index_feed_id":3509739,"rss_url":"https://feed.podbean.com/genomicsengland/feed.xml","website_url":"https://genomicsengland.podbean.com","image_url":"https://pbcdn1.podbean.com/imglogo/image-logo/10639619/CopyofBehindtheGenestemplates_g5qetz.png","author":"Genomics England","episode_count":100,"summary":"At Genomics England, our vision is a world where everyone benefits from genomic healthcare. From the latest research to the lived experiences of those affected by rare conditions and cancer, Behind the Genes brings you closer to the people behind the science. Each month, we release a deep-dive episode, alongside our Genomics 101 series - short explainers designed to make complex terms in genetics and genomics easier to understand.","last_synced_at":null,"page_url":"https://stenobird.com/podcast/behind-the-genes-3509739"},"episode":{"title":"How do people feel about using genomic data to guide health across a lifetime?","slug":"how-do-people-feel-about-using-genomic-data-to-guide-health-across-a-lifetime","published_at":"2025-05-13T07:00:00+00:00","page_url":"https://stenobird.com/podcast/behind-the-genes-3509739/how-do-people-feel-about-using-genomic-data-to-guide-health-across-a-lifetime","show_page_url":"https://stenobird.com/podcast/behind-the-genes-3509739","url":"https://genomicsengland.podbean.com/e/how-do-people-feel-about-using-genomic-data-to-guide-health-across-a-lifetime/","audio_url":"https://mcdn.podbean.com/mf/web/gkuaihc9t2qnsapb/Behind_the_Genes_018_How_do_people_feel_about_using_genomic_data_to_guide_health_across_a_lifetime.mp3","summary":"In this episode of Behind the Genes, we explore the hopes, concerns and complex questions raised by the idea of a lifetime genome — a single genomic record used across a person’s life to guide healthcare decisions. Drawing on conversations from Genomics England’s Public Standing Group on the lifetime genome, our guests explore what it might mean for individuals, families and society to have their genome stored from birth, and how it could transform healthcare. The discussion reflects on the potential for earlier diagnoses, better treatments and long-term prevention, alongside pressing ethical concerns such as data security, consent, and the impact on family dynamics. Participants share their views and discuss the future role of genomic data in medicine, with insights into how trust, equity and public dialogue must shape this evolving field. Our host for this episode, Dr Harriet Etheredge, is joined by Suzalee Blair-Gordon and Gordon Bedford, two members of the Genomics England’s Public Standing Group on the lifetime genome, and Suzannah Kinsella, Senior Associate at Hopkins Van Mil, a social sciences research agency that helped to facilitate this work. Together, they consider the broader societal implications of lifetime genomic data, and how public involvement can help guide policy and practice in the UK and beyond. This conversation is part of our ongoing work through the Generation Study, exploring how genomics can be used responsibly and meaningfully from birth onwards. You can listen to some of our Generation Study episodes by following the links below. What can we learn from the Generation Study? How has design research shaped the Generation Study? What do parents want to know about the Generation Study? \"This isn’t just a science project, it’s about designing a…","meta_description":"In this episode of Behind the Genes, we explore the hopes, concerns and complex questions raised by the idea of a lifetime genome — a single genomic recor…","key_points":[],"chapters":[],"topics":[],"duration_seconds":1835,"processing_state":"not_requested","actions":[{"name":"request_transcript","method":"POST","url":"https://stenobird.com/v1/public/podcasts/behind-the-genes-3509739/episodes/how-do-people-feel-about-using-genomic-data-to-guide-health-across-a-lifetime/transcription-requests","description":"Idempotently request low-priority transcript generation for this episode."},{"name":"read_markdown","method":"GET","url":"https://stenobird.com/podcast/behind-the-genes-3509739/how-do-people-feel-about-using-genomic-data-to-guide-health-across-a-lifetime.md","description":"Read the agent-friendly Markdown representation of this episode resource."}]}}