What is a ‘serious’ genetic condition? The perceptions of people living with genetic conditions

Boardman, F.K., Clark, C.C. (2022) Eur J Hum Genet 30, 160–169. https://doi.org/10.1038/s41431-021-00962-2

‘We're kind of like genetic nomads': Parents' experiences of biographical disruption and uncertainty following in/conclusive results from newborn cystic fibrosis screening

Felicity Boardman & Corinna Clark (2022). Social Science & Medicine 301, 114972. https://doi.org/10.1016/j.socscimed.2022.114972

Attitudes toward population screening among people living with fragile X syndrome in the UK: ‘I wouldn’t wish him away, I’d just wish his fragile X syndrome away’

Felicity K. Boardman (2020). Journal of Genetic Counseling. https://doi.org/10.1002/jgc4.1355

Whose life is worth preserving? Disabled people and the expressivist objection to neonatology

Felicity K Boardman (2020). Acta Paediatr, 110: 391-393. https://doi.org/10.1111/apa.15336

Human genome editing and the identity politics of genetic disability

Felicity Boardman (2020). J Community Genet 11, 125–127. https://doi.org/10.1007/s12687-019-00437-4

Social and cultural influences on genetic screening programme acceptability: A mixed-methods study of the views of adults, carriers, and family members living with thalassemia in the UK

Boardman, FK, Clark, C, Jungkurth, E, Young, PJ. (2020). J Genet Couns. 29: 1026– 1040 https://doi.org/10.1002/jgc4.1231

Preventing lives affected by hemophilia: A mixed methods study of the views of adults with hemophilia and their families toward genetic screening

Boardman, FK, Hale, R, Gohel, R, Young, PJ. (2019). Mol Genet Genomic Med.  7:e618. https://doi.org/10.1002/mgg3.618

Newborn screening for haemophilia: The views of families and adults living with haemophilia in the UK.

Boardman, FK, Hale, R, Young, PJ. (2019) Haemophilia. 25: 276-282. https://doi.org/10.1111/hae.13706

Responsibility, identity, and genomic sequencing: A comparison of published recommendations and patient perspectives on accepting or declining incidental findings

Boardman F, Hale R. (2018). Mol Genet Genomic Med. 6(6):1079-1096. https://doi.org/10.1002/mgg3.485.

“I didn’t take it too seriously because I’d just never heard of it”: Experiential knowledge and genetic screening for thalassaemia in the UK

Felicity K. Boardman and Rachel Hale (2018). J Genet Couns. 28: 141– 154. https://doi.org/10.1002/jgc4.1042

Impairment experiences, identity and attitudes towards genetic screening: the views of people with Spinal Muscular Atrophy

Boardman FK, Young PJ, Griffiths FE. (2018) J Genet Couns. 27(1):69-84. https://doi.org/10.1007/s10897-017-0122-7

Felicity's other publications...

Felicity Boardman on the ethics of genetic screening and genome editing

Felicity was interviewed for a podcast by Physical Attraction.

Physical Attraction interviews "scientists, scholars, authors and reflections on the history and future of science and technology".

Felicity talks about her experiences, the reasons behind the conducting the research, and what the research can tell us.

The Fragile X Community's Views on Screening

Felicity produced a report for the Fragile X Society detailing the findings of the research relating to FXS (Nov 2019)

https://www.fragilex.org.uk/single-post/the-fragile-x-community-s-views-on-screening

Should we edit the genomes of human embryos? A geneticist and social scientist discuss

Article from Head to Head series, where scientists from different disciplines discuss a topic (24th Sept 2018)

https://theconversation.com/should-we-edit-the-genomes-of-human-embryos-a-geneticist-and-social-scientist-discuss-100355

Should Newborns be Screened for Hemophilia - A Survey

Article by Candy Gulko for Medpage Today (August 14th 2019), following the publication of paper "Newborn screening for haemophilia.."

https://www.medpagetoday.com/resource-centers/advances-hemophilia-a/should-newborns-screened-hemophiliaa-survey/2595?nocache=true

China orders inquiry into claims of world's first gene-edited babies

Felicity interviewed for article in Research Fortnight, by Ashleigh Furlong (27th Nov 2018)

https://www.researchprofessional.com/0/rr/news/world/asia/2018/11/China-orders-inquiry-into-claims-of-world-s-first-gene-edited-babies.html

Genetic Disability, Experience and the Sorting Society

Blog by Felicity for Wellcome Sanger Institute, discussing the research findings and the issues that society needs to face as we move into the era of genomic medicine.

https://sangerinstitute.blog/2019/01/30/genetic-disability-experience-and-the-sorting-society/

As someone with a genetic condition, I’m worried genome editing might be used to make permanent changes to the blueprint of human existence

Felicity discusses genome editing in this article in the Independent (17th July 2018)

https://www.independent.co.uk/voices/genome-editing-human-genes-designer-babies-illness-traits-diseases-disabilities-nuffield-council-a8451491.html

Most people in favor of screening for spinal muscular atrophy

Article in ScienceDaily (5th Dec 2017), following the publication of paper "Newborn genetic screening for spinal muscular atrophy in the UK.."

https://www.sciencedaily.com/releases/2017/12/171205120010.htm

Also reported in Alpha Galileo, Medical News Today, Science Daily, Spinal Surgery News