News and events

Genetic testing seeks co-ordinated approach in re-contacting patients (read press release here)

Should healthcare systems implement routine recontacting services in clinical practice? Some legal and logistical considerations (Harvard Bill of Health; read here)

Outputs

Publications

Carrieri D, Howard HC, Clarke AJ, Stefansdottir V, Cornel MC, van El CG, Forzano F . Reply to Bombard and Mighton (2019) European Journal of Human Genetics Author URL.

Doheney S, Clarke A, Carrieri D, Dheensa S, Hawkins N, Lucassen A, Turnpenny P, Kelly SE. Dimensions of responsibility in medical genetics: exploring the complexity of the “duty to recontact” (2018) New Genetics and Society, 37(3) https://doi.org/10.1080/14636778.2018.1510309

Carrieri D, Howard H, Benjamin C, Clarke A, Dheensa S, Doheny S, Hawkins NL, Halbersma-Konings T, Jackson L, Kayserili H, et al (2018). Recontacting patients in clinical genetics services: recommendations of the European Society of Human Genetics. European Journal of Human Genetics https://www.nature.com/articles/s41431-018-0285-1

Sirchia F, Carrieri D, Dheensa S, Benjamin C, Kayserili H, Cordier C, van El CG, Turnpenny PD, Melegh B, Mendes Á, et al. Recontacting or not recontacting? a survey of current practices in clinical genetics centres in Europe (2018) European Journal of Human Genetics, 1-9. https://www.nature.com/articles/s41431-018-0131-5

Carrieri D, Dheensa S, Doheny S, Clarke A, Turnpenny PD, Lucassen AM, Kelly SE. Recontacting in clinical practice: the views and expectations of patients in the United Kingdom (2017) European Journal of Human Genetics http://rdcu.be/uGPz

Dheensa, S., Carrieri, D., Kelly, S., Clarke, A., Doheny, S., Turnpenny, P., Lucassen, A. A 'joint venture' model of recontacting in clinical genomics: challenges for responsible implementation (2017) European Journal of Medical Genetics http://www.sciencedirect.com/science/article/pii/S1769721217301428 

Dove ES, Kelly SE, Lucivero F, Machirori M, Dheensa S, Prainsack B. Beyond individualism: Is there a place for relational autonomy in clinical practice and research? (2017) Clinical Ethics  http://journals.sagepub.com/eprint/4Txqa7QmAvJZaRTJwauR/full

Carrieri D, Dheensa S, Doheny S, Clarke AJ, Turpenny PD, Lucassen AM, Kelly SE. Recontacting in clinical practice? We need to talk about it (2017) European Journal of Human Genetics http://rdcu.be/pJ0d

Carrieri D, Dheensa S, Doheny S, Clarke AJ, Turpenny PD, Lucassen AM, Kelly SE. Recontacting in clinical practice: an investigation of the views of healthcare professionals and clinical scientists in the United Kingdom. (2017) European Journal of Human Genetics doi: 10.1038/ejhg.2016.188

Carrieri D., Lucassen A.M., Clarke, A.J., Dheensa S., Doheny, S., Turnpenny P.D., Kelly, S.E. Recontact in clinical practice: a survey of clinical genetics services in the United Kingdom. (2016) Genetics in Medicine  doi:10.1038/gim.2015.194 

Conferences and Workshops

Recontacting patients when new genomic findings come to light, Policy Event, Wellcome Collection, London, June 2017. Policy Brief available here

Carrieri D., Dheensa S., Doheny S.,Turnpenny P., Clarke A., Lucassen A., Hawkins N., Kelly S., Recontacting in clinical practice: results from an investigation of the perspectives of patients and healthcare professionals in the United Kingdom, ESHG, Copenhagen, May 2017 

Carrieri D., Dheensa S., Doheny S., Clarke A. Recontacting in Genetics Practice, dissemination event, Institute of Medical Genetics Seminar Room, Institute of Medical Genetics Building, Heath Park, Cardiff, March 2017

Carrieri D., Dheensa S., Doheny S., Lucassen A., Turnpenny P., Clarke A., Kelly S. Recontact in Genetics Practice, dissemination event at Genethics Club and 100K Genethics geCIP meeting, Academy of Medical Sciences, London, February 2017 

Carrieri D., Dheensa S., Doheny, S.,  Lucassen A., Turnpenny P., Clarke A., Kelly S. Recontacting in clinical practice: an investigation of  the perspectives of healthcare professionals in the United Kingdom, ESHG/EMPAG Annual meeting, Barcelona, May, 2016 

Carrieri D., Dheensa S., Doheny S., Lucassen A., Turnpenny P., Clarke A., Kelly S. Is there an ethical and/or legal obligation for healthcare providers to recontact former patients in light of new genetic findings?, ASHG Annual meeting, Baltimore, October 2015

Carrieri D., Dheensa S., Doheny S., Lucassen A., Turnpenny P., Clarke A., Kelly S. Is there an ethical and/or legal obligation for healthcare providers to re-contact former patients in light of new genetic findings?, Inaugural ELSI 2.0 Conference: Translation in Healthcare, HeLEX, Univeristy of Oxford, June 2015

Kelly S. Re-contacting genetic patients: Current practices in the UK, thresholds of certainty and a duty to inform, German Genetic Testing Commission, June 2015  

Carrieri D., Dheensa S., Lucassen A., Turnpenny P., Clarke A., Kelly S. Is there an ethical and/or legal obligation for healthcare providers to recontact former patients in light of new genetic findings?, ESHG Annual meeting Glasgow, June 2015

Carrieri D. Re-contacting patients in a dynamic healthcare environment – Planning User Involvement Workshops, BSA Applied Qualitative Health Research Special Interest Group One Day Symposium - Qualitative Health Research in Practice, May 2015

Kelly S. Re-contacting. South West of Britain Regional Genetics Meeting Exeter, RILD Building, Royal Devon and Exeter Hospital, March 2015 

Kelly S. On social and ethical dimensions of data sharing. What is Data-Intensive Science, ERC project. University of Exeter, December 2014

Carrieri D. Mainstreaming genetics in healthcare: examining a duty to re-contact across the healthcare landscape. Clinical Genetics Department, Royal Devon & Exeter Hospital, Exeter, June 2014 

Kelly S. Mainstreaming genomics: re-contacting patients in a dynamic healthcare environment. The GenEthics Club, London, February 2014