“My vision is to bring the voices of people living with disabilities (often not prioritised) to the fore of debates around the implications of genomic medicine and to raise awareness of the full range of implications genomic medicine has for our society. I am compelled by developments in genomic medicine, and in particular the increased number of decisions it brings to an ever-broadening remit of people. I am driven to explore the various ways people make sense of, and respond to these decisions and the impacts such decisions have for both people living with genetic disease/disability and the general public.”
Dr. Felicity Boardman is professor in medicine ethics and society from Warwick Medical School. Her research career has focused on the social and ethical implications of genetic technologies, and in particular, their relationship to disabled people and their families. Amongst other recent grants, she is the recipient of a Wellcome Trust Investigator Award to explore attitudes towards pre-conception carrier screening in the "Imagining Futures" project.
Imagining Futures & I:DNA
The Imagining Futures project "is a study designed to bring the perspectives of people living with genetic conditions into public awareness and into the debates around genomic medicine, at a time when genomic medicine is moving into the NHS," says Felicity. She continues "I wanted to know, how do families and individuals living with genetic conditions view advancements in genomic medicine and the possibility of population screening for their condition... is it an appropriate goal to have fewer people coming into the world with inherited conditions. Do they consider the condition they live with serious?"
Felicity used qualitative and quantitative methods, interviewing people with six different genetic conditions (cystic fibrosis, thalassaemia, fragile X, haemophilia and spinal muscular atrophy), along with members of their families. These interviews with people who have lived experience of genetic disease are "a really useful resource when it comes to deciding the future of genomic medicine", Felicity says. "They force us to move beyond looking at disease severity with just a clinical focus. Their accounts compel us to consider the multi-dimensional way in which these conditions are lived"
I:DNA is a multi-sensory art installation was conceived from a collaboration between Felicity and artists from Stamp Theatre and Media Productions. The initial idea for creating a piece of art came from the fact that, strikingly "on the whole the general public does not have access to the views of people living with genetic conditions." The central feature of I:DNA is a large metal double helix, covered in luggage and handbags, "the genetic baggage that each of us carry". Visitors are "screened" as they entered the installation, walking through an airport security style gate, and then are engulfed in a soundscape of original music in the style of a Gregorian chant, the lyrics sung are taken directly from the research interviews of the Imagine Futures project.
The tour of the traveling installation was cut short due to Covid-19. It now has an online home on the University of Warwick website, so that it can be experience virtually.
This hour long video from the University of Warwick's YouTube channel features a talk with Felicity, interview footage of people with genetic conditions talking about their lives and footage of I:DNA in situ at the British Science Festival.
Mixed methods; genetic and reproductive technologies; disability; Spinal Muscular Atrophy; qualitative research methods; stigma.
Research Grants & Awards
1) Small Grant in Humanities and Social Science Wellcome Trust, ‘Developing future research agendas on the socioethical impact of genomics through interdisciplinary live data-sharing’, August 2021-August 2023 (£35, 437)
2) Research Enrichment Award (Public Engagement) Wellcome Trust, April 2018- July 2021 (£42,500)
3) Wellcome Trust Investigator Award, February 2017- February 2020 (£248, 802)
2) ESRC Future Research Leaders Fellowship, 'Imagining Futures: The Social and Ethical Implications of Genetic Screening' , May 2013- Feb 2017 (£161,074)
3) Mildred Blaxter Post-Doctoral Fellowship from the Foundation for the Sociology of Health and Illness. November 2011- April 2013 (£38,000)
4) ESRC 1+3 Doctoral Scholarship, Department of Sociology, 2005-2009 (£80,000)
Boardman F. 2019. Human genome editing and the identity politics of genetic disability, Journal of Community Genetics (invited commentary) ,11(2), 125-127. https://doi.org/10.1007/s12687-019-00437-4
Boardman F. 2020. Gene Editing and Disabled People: A Response to Iñigo de Miguel Beriain, Journal of Community Genetics, 11, 245-247.
Boardman, F, Clark C, Jungkurth E, Young P. 2020. Social and Cultural Influences on Screening ProgrammeAcceptability: A Mixed Methods Study of the Views of Adults, Carriers and Family Members Living with Thalassaemia in the UK, Journal of Genetic Counseling, https://doi.org/10.1002/jgc4.1231
Boardman, F. 2020. Whose life is worth preserving? Disabled people and the expressivist objection to neonatology, Acta Paediatrica, https://doi.org/10.1111/apa.15336
Thomas LA, Lewis1 S, Massie J, Kirk EP, Archibald AD, Barlow-Stewart K, Boardman FK, Halliday J, McClaren B, Delatycki1 MB. 2020. Which types of conditions should be included in reproductive genetic carrier screening?: Views of parents of children with a genetic condition, European Journal of Medical Genetics, [In press]
Boardman, FK. 2020. Attitudes towards population screening amongst people living with fragile X syndrome in the UK: “I wouldn’t wish him away, I’d just wish his fragile X syndrome away”, Journal of Genetic Counseling, [In Press].
Boardman, Felicity K., Hale, Rachel, Young, Philip J.. 2019. Prevention of lives affected by haemophilia : a mixed methods study of the views of adults with haemophilia and their families towards genetic screening. Molecular Genetics and Genomic Medicine
Boardman, Felicity K., Young, P., Warren, O., Griffiths, Frances. 2018. The role of experiential knowledge within attitudes towards genetic carrier screening : a comparison of people with and without experience of spinal muscular atrophy. Health Expectations, 21 (1), pp. 201-211
Boardman, Felicity K., Young, Philip J., Griffiths, Frances. 2018. Impairment experiences, identity and attitudes towards genetic screening : the views of people with Spinal Muscular Atrophy. Journal of Genetic Counseling, 27 (1), pp. 69-84
Boardman, Felicity K., Sadler, Chloe, Young, Philip J.. 2018. Newborn genetic screening for spinal muscular atrophy in the UK : the views of the general population. Molecular Genetics and Genomic Medicine, 6 (1), pp. 99-108
Boardman, Felicity K., Hale, Rachel. 2018. How do genetically disabled adults view selective reproduction? : impairment, identity and genetic screening. Molecular Genetics & Genomic Medicine
Boardman, Felicity K., Hale, Rachel. 2018. "I didn't take it too seriously because I'd just never heard of itâ€ : experiential knowledge and genetic screening for thalassaemia in the UK. Journal of Genetic Counseling
Boardman, Felicity K., Hale, Rachel. 2018. Responsibility and identity and genomic sequencing : a comparison of published recommendations and patient perspectives on accepting or declining incidental findings. Molecular Genetics and Genomic Medicine, 6 (6), pp. 1079-1096
Boardman, Felicity K.. 2017. Experience as knowledge : disability, distillation and (reprogenetic) decision-making. Social Science & Medicine, 191, pp. 186-193
Boardman, Felicity K., Young, Philip J., Griffiths, Frances. 2017. Newborn screening for spinal muscular atrophy : the views of affected families and adults. American Journal of Medical Genetics Part A, 173 (6), pp. 1546-1561
Boardman, Felicity K., Young, Philip J., Griffiths, Frances. 2017. Population screening for spinal muscular atrophy : a mixed methods study of the views of affected families. American Journal of Medical Genetics (Part A), 173 (2), pp. 421-434
Griffiths, Frances, Boardman, Felicity K., Chondros, Patty, Dowrick, Christopher, Densley, Konstancja, Hegarty, Kelsey, Gunn, Jane. 2015. The effect of strategies of personal resilience on depression recovery in an Australian cohort : a mixed methods study. Health : An Interdisciplinary Journal for the Social Study of Health, Illness and Medicine, Volume 19 (Number 1), pp. 86-106
Griffiths, Frances, Mason, Victoria, Boardman, Felicity K., Dennick, Kathryn J., Haywood, Kirstie L., Achten, Juul, Parsons, Nicholas R., Griffin, Xavier L., Costa, Matthew L.. 2015. Evaluating recovery following hip fracture : a qualitative interview study of what is important to patients. British Medical Journal, Volume 5 (Number 1), pp. 1-10
Boardman, Felicity K.. 2014. Knowledge is power? : the role of experiential knowledge in genetically 'risky' reproductive decisions. Sociology of Health & Illness, Volume 36 (Number 1), pp. 137-150
Boardman, Felicity K.. 2014. The expressivist objection to prenatal testing : the experiences of families living with genetic disease. Social Science & Medicine, Volume 107, pp. 18-25
Boardman, Felicity K.. 2014. Experiential knowledge of disability, impairment and illness : the reproductive decisions of families genetically at risk. Health: Interdisciplinary Journal for the Social Study of Health, Illness & Medicine, Volume 18 (Number 5), pp. 476-492
Staniszewska, Sophie, Boardman, Felicity K., Gunn, Lee, Roberts, Julie, Clay, Diane, Seers, Kate, Brett, Jo, Avital, Liz, Bullock, Ian, O' Flynn, N.. 2014. The Warwick patient experiences framework : patient-based evidence in clinical guidelines. International Journal for Quality in Health Care, Volume 26 (Number 2), pp. 151-157
Griffiths, Frances, Cave, Jonathan A. K., Boardman, Felicity K., Ren, Justin, Pawlikowska, T., Ball, Robin, Clarke, Aileen, Cohen, Alan B.. 2012. Social networks : the future for health care delivery. Social Science & Medicine, Volume 75 (Number 12), pp. 2233-2241
Griffin, Xavier L., Achten, Juul, Parsons, Nicholas R., Boardman, Felicity K., Griffiths, Frances, Costa, Matthew L.. 2012. The Warwick Hip Trauma Evaluation - an abridged protocol for the WHiTE Study : a multiple embedded randomised controlled trial cohort study. Bone & Joint Research, Volume 1 (Number 11), pp. 310-314
Boardman, Felicity K., Griffiths, Frances, Kokanovic, Renata, Potiriadis, Maria, Dowrick, Christopher, Gunn, Jane. 2011. Resilience as a response to the stigma of depression : a mixed methods analysis. Journal of Affective Disorders, Vol.135 (No.1-3), pp. 267-276
Brown, Lindsey, Boardman, Felicity K.. 2010. Accessing the field : disability and the research process. Social Science & Medicine, Vol.72 (No.1), pp. 23-30
Griffiths, Frances, Lowe, Pam, Boardman, Felicity K., Ayre, Catherine, Gadsby, Roger. 2008. Becoming pregnant : exploring the perspectives of women living with diabetes. British Journal of General Practice, Vol.58 (No.548), pp. 184-190