Society and Ethics Research
Positive framing of genomics met with scepticism in some communities
Language about genomics used by clinicians and researchers potentially alienates disengaged public audiences. New research suggests that in future, social and historical context should be acknowledged first before discussing scientific detail, in order to effectively engage these groups.
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Citizens’ jury votes for government to begin serious discussion about potentially changing the law on editing human embryos
The jurors voted that the UK government should consider changing the law, albeit with strong recommendations on how the process should be handled.
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UK citizens’ jury to bring a patient voice to decisions about human embryos
A jury of 24 people with lived experience of genetic conditions will form a Citizens’ Jury hosted on the Wellcome Genome Campus.
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Building a foundation for “Generation Genome”
Two film projects, commissioned and produced by Wellcome Connecting Science, explore the work and impact of genetic counsellors, and convey the value of research in order to evolve practice. A total of nineteen films across two series, they are free, and publicly available to download and share.
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Finding ways to listen
A recent national commitment to increased public involvement in research coincides with a step change in our efforts in Wellcome Connecting Science to enable the public to contribute to shaping genomic research.
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Motivations to take part in research vary around the world
Media release: Being able to receive results is a key motivator that influences participation in research, according to public audiences from the USA, but is less important elsewhere in the world.
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I:DNA – an immersive exploration into the view of people living with genetic conditions
Multi-sensory art installation delving into the lived-experiences of people with a range of inherited conditions moves online.
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Future Of Genomic Research at Risk Without Greater Public Trust in How Genetic Data Is Shared, Survey Finds
New findings on public trust from the Society and Ethics Research group
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Why plumbers and teachers should have a say on designer babies and genetically enhanced potatoes
The Society and Ethics Research team are part of a new global project
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Cultural sensitivity, the key to engaging research
Introducing Charlie, the Ghanaian star in the latest the Your DNA, Your Say survey, gathering the views of people around the world on online health data and how it might be used by others.
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Genetic Counsellors: Walking on the genetics journey
Professor Anna Middleton explores the importance of research to the implementation of genetic counselling into clinical practice.
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Genetic Counsellors: Enabling Patients to Fostering Resilience
Dr Jonathan Roberts shares his insights into the challenges genetic counsellors face in helping patients adjust to uncertainty.
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Genetic Counsellors: Helping patients cope with bad results
Dr Chirstine Patch talks about the art of caring in genetic counselling clinical practice.
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COVID-19, genomics and the ordinary language of extraordinary things
We're living during a period rife with scientific buzzwords. To what degree does the science itself need to be ‘explained’ in ordinary and everyday terms?
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Genetic Counsellors: Communicating complex messages
Explore how and why genetic counsellors need specialist communication skills and high emotional intelligence to effectively help their clients and their respective families.
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Genetic Counsellors: An Important Part of Multidisciplinary Clinical Healthcare Teams
“Genetic Counsellors are increasingly playing a pivotal role in multidisciplinary team meetings, which is a great way of mainstreaming genomic knowledge from genetic counsellors into the wider healthcare team”.
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Genetic Counsellors: A unique skill set
Explore the emotional dynamics of genetic testing and hear how the counselling process is more than just the delivery of technical information.
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The duty of care: a genetic balancing act?
Who does genetic testing information belong to, and who decides who it is shared with?
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Genetic counselling in Focus
The vital role of genetic counsellors, in their own words: Introduction to the Voices of Genetic Counsellors video series.
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Addressing inclusion in genetic counselling: A trans community perspective
Reubs Walsh, a scientist working to define better healthcare guidelines for the transgender community, joined the 2019 World Congress on Genetic Counselling to talk about transgender risk profiles.
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European Journal of Medical Genetics - Special issue on Genetic Counselling
The special issue of this journal is guest edited by Anna Middleton, Barbara Biesecker and Christine Patch.
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“Informed Consent” to edit embryos: what consent?
Richard Milne and Anna Middleton from Society and Ethics Research provide a commentary on informed consent and its relation to gene editing in human embryos, in the context of recent activities in this area.
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The Future of Genetic Counselling
Dr Jonathan Roberts discusses how genetic counselling may develop in the new age of genomic medicine.
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Free online course to help nurses with genetic counselling in the new genomic era
Advanced Courses and Scientific Conferences announces the launch of its first online course in Genetic Counselling in partnership with FutureLearn.
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Developing a genomics workforce for the future
We discuss the recommendations of the Topol Review in relation to genomics.
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New films explore the ethical questions raised by the ABC versus St George’s NHS Trust case
The films aim to facilitate discussion around issues that are at the centre of a case that may lead to a legal change in the patient-doctor relationships of the future.
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VIDEO: The technical whys and hows of the Your DNA, Your Say survey and its translations
Society and Ethics Research Team Manager, Lauren Farley, discusses her short film about the 'Your DNA Your Say' survey and its translations.
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A new deal on data – articulating the contract between science and people
Society and Ethics Research calls for a people-powered consultation, a conversation focusing on how science and humanity collaborate and win, together, when it comes to DNA data sharing.
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Music of Life: A new communication tool for healthcare professionals
The Music of Life project comprises six short, musical films created for any health professional who needs to communicate genomic information to patients.
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First World Congress for Genetic Counselling takes place at the Wellcome Genome Campus
Connecting Science's Anna Middleton gives us her perspective on the meeting.
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Key policy statement on germline editing informed by Wellcome Genome Campus Connecting Science
An international group of 11 organisations with clinical genetics expertise has issued a policy statement on germline genome editing in humans.
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Supporting health professionals to talk ‘genetics’ with patients
Read about the how and whys of the ‘Counselling skills for genomics’ module, part of the new Mst in Genomic Medicine at the University of Cambridge.
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Leading the genomics revolution in everyday nursing practice
The first G2NA retreat identified how to get genomics integrated into practice, policy, professional development, and nursing curricula worldwide.
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Connecting Science at the Cambridge Science Festival 2017
View events hosted by Connecting Science's Public Engagement and Society and Ethics Research teams at the Cambridge Science Festival 2017
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Society and Ethics Research: what do we really think about genomics?
We listen and learn as well as share and inform.
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Society and Ethics Research films find new festival-going audiences
This autumn shorts films produced by Wellcome Genome Campus Society and Ethics Research are being shown in festivals in Europe and the USA.
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Your Genome, Your Research Agenda
Listening to patient experiences of genome sequencing.
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Your DNA, Your Say: global survey on online health data and sharing
Your DNA Your Say is an ambitious, global research project in the form of a ‘film-survey’ experience gathering the views of people around the world on online health data and how it might be used by others.
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Socialising the Genome: Sparking discussions about genomics in everyday life
The Society and Ethics Research team has launched a project called Socialising the Genome to explore how to turn genomics from an anti-social concept to a more social one.
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