Imagining Futures: The Social and Ethical Implications of Genetic Screening
Developments in genetic medicine over the past 50 years have had a great impact on the number and nature of decisions to be made by prospective parents.
The Imagining Futures Project is a research project exploring the social and ethical implications associated with the expansion of genetic screening, focusing on the genetic condition Spinal Muscular Atrophy (SMA). In 2017, the Imagining Futures study was extended to include further genetic conditions, funded by the Wellcome Trust.
Hear Lead Researcher, Dr Felicity Boardman, discussing the Imagining Futures project, its findings and the next steps for the research:
The Imagining Futures Project is currently looking for participants, please click on 'Get Involved' if you would like to know how you can take part in Imagining Futures.
News and Events
12/04/2022 Paper published, ‘We're kind of like genetic nomads': Parents' experiences of biographical disruption and uncertainty following in/conclusive results from newborn cystic fibrosis screening, in Social Sceince & Medicine, see here
21/02/2022 Felicity gave a presentation at PET event 'Whole Genome Sequencing at Birth: a Resource from Cradle to Grave' discussing some of the ethical issues associated with WGS in newborns (recording will be available via PET in due course)
22/01/2022 'DNA Our Stories' spoken word and poetry event took place at Warwick Arts Centre as part of the Resonate Festival under the Being Human theme, you can view a recording of the event here
27/09/2021 Paper 'What is a ‘serious’ genetic condition? The perceptions of people living with genetic conditions' published in European Journal of Human Genetics, you can read the paper here
09/09/2021 Felicity gave a plenary presentation at MedSoc (British Sociological Association). More details here
08/07/2021 Felicity presents at the report findings meeting for the UK Public Dialogue into Whole Genome Sequencing for Newborn Screening. Watch the meeting here
20/05/2021 I:DNA opens at Leamington Art Gallery and Museum and runs until December 2021. For (free) tickets go to Book Tickets
16/03/2021 Felicity takes part in a RoRI podcast panel about how to make the world of research more equitable, diverse and inclusive. Listen to it here
03/02/2021 Felicity appointed as a Foundation Fellow for the new Warwick Institute of Engagement
13/01/2021 Felicity gave her inaugural professorial lecture - Valuing Lived Experience in a Genomic Age: Why the Personal is Still Political, which you can view here Leading Lights inaugural lecture.
11/11/2020 Welcome to I:DNAonline, part of ESRC Festival of Social Science, see video, presentation and discussion here.
18/02/2020 I:DNA launches at Millennium Point, Birmingham
11/01/2020 Felicity takes part in plenary debate on 'Genetic enhancement of humans' at Fertility 2020 'Reproduction in a changing world' conference, Edinburgh
02/11/2019 I:DNA launches at ESRC Festival of Social Science, Coventry Cathedral
26/10/2019 I:DNA launches at Oxford Science and Ideas Festival
12/09/2019 I:DNA launches at British Science Festival, University of Warwick
27/02/2019 Felicity discusses predictive genetic testing with Vic Minett on BBC Cov&Warks. You can hear the interview here
14/01/2019 Felicity presented 'Unravelling Disability’s DNA: Experience and Identity in a Genomic Age' for the Society and Ethics Research Seminar Series, Wellcome Genome Campus, Cambridge. You can see her talk here
24/09/2018 Fragile X Screening Survey (UK) has been launched! You can access the survey here. Survey now closed.
29/06/2018 Cystic Fibrosis Screening Survey (UK) has been launched! You can access the survey here. Survey now closed.
21/05/2018 Thalassaemia Screening Survey (UK) has been launched! You can access the survey here. Survey now closed.
30/04/18 Hear Felicity talking about screening, genetics and disability on Radio 4's Four Thought here
13/03/18 Haemophilia Screening Survey (UK) has been launched! Members of the Haemophilia Society should receive their copy through the post, alternatively, you can access the survey here. Survey now closed.
26/03/18 Social Science and Ethics GECIP Meeting. Felicity and Rachel presented at the social science and ethics GECIP meeting for the 100k Genomes Project.
09/02/18 Felicity presented the IF study at the PAGE (Prenatal Assessment of Genomes and Exomes) Conference (London).You can read about the PAGE study here.
15/10/17 Experience as Knowledge Paper Published (Social Science & Medicine). Felicity's paper on experiential knowledge has been published in Social Science & Medicine, you can read the paper here.
13/10/17 Felicity in the news: 'Difficult Choices: would-be parents urged to screen for genetic disorders.' Felicity was approached to contribute to this article, published in the Brisbane Times. You can read the full article here.
12/08/17 'Why we should be worried about gene carrier screening'. Read the article Felicity has published in The Conversation here.
20/07/17 Paper published exploring how SMA families compare to the general population when it comes to screening attitudes. You can read it here.
07/07/17 Paper published exploring possible reasons for why people with experience of type II SMA were least likely to support screening. You can read it here.
11/05/17 Felicity's work is cited in the parliamentary report on genomics and genome editing.
11/04/17 SMA News Today publishes article on the Imagining Futures Project. You can find it here.
4/4/17 Paper on newborn screening published in American Journal of Medical Genetics. You can read the paper here.
23/3/17 The findings of the Imagining Futures Project are cited in the Nuffield Council on Bioethics's review of the ethics of Non-Invasive Prenatal Testing. You can read the report here.
26/10/16 First paper on the findings of the Imagining Futures Published in American Journal of Medical Genetics. You can access the paper here.
4/8/16 Felicity in conversation with Esther Fox, the creator of Pandora's Box, bringing issues around genetic screening and disability into the public eye. You can view their interview and the art installation here.
9/05/16 Felicity's article 'Should we edit out genetic disease?' is published in The Conversation. You can read the article here.
11/4/16 Felicity's article 'Identity, disability and the genome' is published in Bionews. You can read the article here.
13/02/16 SMA Support UK Publish Report on Imagining Futures Project. You can view this report here.
10/02/16 Meeting of the Expert Review Panel. Today, the expert review panel met at the University of Warwick to discuss SMA screening and the results of the SMA Screening Survey (UK). Fascinating discussion!
12/01/16 Meeting with SMA Support UK Felicity went to meet with staff from SMA Support UK to discuss the findings of the SMA Screening Survey (UK).
29/06/15 SMA Screening Survey (UK) is due to close tomorrow Thank you for all your responses so far! Looking forward to sharing some results as they become available.
01/09/14 The SMA Screening Survey (UK) has been launched! You can access the survey here.
11/08/14 The SMA Screening Survey (UK) is due to be launched in September! Please look out for the survey on the Imagining Futures webpage and on its Twitter and Facebook Pages. If you are a member of SMA Support UK, you will also receive a copy with your September edition of 'Inspirations'.
17/12/13 Imagining Futures blog launched A blog has now been established to run alongside the project. To keep up to date with Imagining Futures, please click here
7/12/13 Felicity will be running a workshop on SMA screening at the Jennifer Trust conference, 'Day to Day with SMA', 28th-29th June 2014 in Stratford. For further details of the conference, please click here
26/11/13 Publication in Bionews Felicity has written a piece on screening dilemmas for 'bionews', the publication of the Progress Educational Trust which you can read here
18/11/13 Expert Review Panel: The first expert review panel for parents of children with Down's Syndrome was held last week which resulted in a fascinating discussion around both SMA and Down's Syndrome screening.
06/11/13 Carrier screening for SMA: can now be purchased privately in the UK
06/11/13 Down's Syndrome Screening: Non-Invasive Prenatal Testing for Down's Syndrome is being trialled in the UK.
30/11/13 Expert Review Panel: The first expert review panel was held in London today, involving people living with SMA in their family. A useful discussion was had. Updates to follow!
03/10/13 Expert Review Panel: The first Imagining Futures expert review panels will be held in October and November.
01/08/13 Imagining Futures: August is International SMA Awareness Month. How will you mark the month?
31/07/13 Imagining Futures: If you participated in an interview with Felicity in 2008/9, please get in touch if you are interested in being re-interviewed!
30/07/13 Imagining Futures: Interesting discussion on Radio 4's 'Inside the Ethics Commitee'. Should a genetic disability stop you accessing fertility treatment? Alice Maynard, who is on the panel, has SMA herself.
Information about the conditions being studied
- About Cystic Fibrosis
- About Fragile X
- About Haemophilia
- About Spinal Muscular Atrophy
- About Thalassemia
- About Down's Syndrome
- Current UK screening policies
Latest Project News