Peer reviewed publications
In the United Kingdom, genetic counsellors work together with clinical geneticists and clinical s... more In the United Kingdom, genetic counsellors work together with clinical geneticists and clinical scientist colleagues within specialist genetics services, but they also often work in multidisciplinary teams (MDTs) outside of such services. There, they contribute genetic knowledge together with expert understanding of how to communicate genetic information effectively. They can offer education and support to the MDT, while providing management advice for both affected patients and the extended at-risk family members. As genomic technologies are implemented across many disciplines within healthcare, genetic counsellors are playing a key role in enabling non-genetic health professionals learn, understand and integrate genomic data into their practice. They are also involved in curriculum development, workforce planning, research, regulation and policy creation – all with the aim of ensuring a robust evidence base from which to practise, together with clear guidelines on what constitutes competence and good practice. The Association of Genetic Nurses and Counsellors (AGNC) in The United Kingdom (UK) and Republic of Ireland is committed to supporting genetic counsellors, across all sectors of healthcare and research, as they help deliver genomic medicine for the patient, family and world-class health services.
Bookmarks Related papers MentionsView impact
Despite advances in genomic science stimulating an explosion of literature around returning healt... more Despite advances in genomic science stimulating an explosion of literature around returning health-related findings, the possibility of returning entire genome sequences to individual research participants has not been widely considered. Through direct involvement in large-scale translational genomics studies, we have identified a number of logistical challenges that would need to be overcome prior to returning individual genome sequence data, including verifying that the data belong to the requestor and providing appropriate informatics support. In addition, we identify a number of ethico-legal issues that require careful consideration, including returning data to family members, mitigating against unintended consequences, and ensuring appropriate governance. Finally, recognising that there is an opportunity cost to addressing these issues, we make some specific pragmatic suggestions for studies that are considering whether to share individual genomic datasets with individual study participants. If data are shared, research should be undertaken into the personal, familial and societal impact of receiving individual genome sequence data.
Bookmarks Related papers MentionsView impact
The Lancet, Dec 2014
Bookmarks Related papers MentionsView impact
European journal of human genetics : EJHG, 2014
Bookmarks Related papers MentionsView impact
Journal of Community Genetics, 2014
Bookmarks Related papers MentionsView impact
Social science research, 2014
Bookmarks Related papers MentionsView impact
British Medical Journal, 2014
Bookmarks Related papers MentionsView impact
American Journal of Medical Genetics Part 1, 2013
Bookmarks Related papers MentionsView impact
Journal of Genetic Counseling, 2012
Bookmarks Related papers MentionsView impact
British Medical Journal, 2010
Bookmarks Related papers MentionsView impact
British Medical Journal, 2008
Bookmarks Related papers MentionsView impact
Sign Language Studies, 2010
Bookmarks Related papers MentionsView impact
Sign Language Studies, 2010
Bookmarks Related papers MentionsView impact
Nursing standard (Royal College of Nursing (Great Britain) : 1987)
Bookmarks Related papers MentionsView impact
Journal of Evaluation in Clinical Practice, 2010
Aims and objectives To explore the preferences of deaf people for communication in a hospital co... more Aims and objectives To explore the preferences of deaf people for communication in a hospital consultation.Methods Design – cross-sectional survey, using a structured, postal questionnaire. Setting – survey of readers of two journals for deaf and hard of hearing people. Participants – 999 self-selected individuals with hearing loss in the UK, including those who use sign language and those who use speech. Main outcome measures – preferred mode of communication.Results A total of 11% of participants preferred to use sign language within everyday life, 70% used speech and 17% used a mixture of sign and speech. Within a clinic setting, 50% of the sign language users preferred to have a consultation via a sign language interpreter and 43% indicated they would prefer to only have a consultation directly with a signing health professional; 7% would accept a consultation in speech as long as there was good deaf awareness from the health professional, indicated by a knowledge of lip-reading/speech-reading. Of the deaf speech users, 98% preferred to have a consultation in speech and of this group 71% indicated that they would only accept this if the health professional had good deaf awareness. Among the participants who used a mixture of sign language and speech, only 5% said they could cope with a consultation in speech with no deaf awareness whereas 46% were accepting of a spoken consultation as long as it was provided with good deaf awareness; 30% preferred to use an interpreter and 14% preferred to have a consultation directly with a signing health professional.Conclusions The hospital communication preferences for most people with deafness could be met by increasing deaf awareness training for health professionals, a greater provision of specialized sign language interpreters and of health professionals who can use fluent sign language directly with clients in areas where contact with deaf people is frequent.
Bookmarks Related papers MentionsView impact
Encyclopaedia of Life Sciences eLS, 2013
Bookmarks Related papers MentionsView impact
Journal of Genetic Counseling, 2007
This Editorial provides background information to inform the report from the United Kingdom (UK) ... more This Editorial provides background information to inform the report from the United Kingdom (UK) and Eire Association of Genetic Nurses and Counsellors (AGNC) Supervision Working Group on Genetic Counselling Supervision. We begin by introducing the context of practice as a genetic counselor in the UK and then follow with an overview of events that have happened in our profession that led to the need and creation of the report. Genetic counseling supervision has become instrumental to our practice, training and registration as genetic counselors in the UK.
Bookmarks Related papers MentionsView impact
Journal of Genetic Counseling, 2007
The Association of Genetic Nurses and Counsellors (AGNC) is the professional organisation which r... more The Association of Genetic Nurses and Counsellors (AGNC) is the professional organisation which represents genetic counsellors and genetic nurses in the United Kingdom (UK) and Eire. The AGNC recognises that genetic counselling supervision is instrumental to the practice, training and registration of genetic counsellors in the UK. The AGNC formed a Supervision Working Group, whose terms of reference were to collate information on supervision and create a list of ‘best practice’ recommendations for its genetic counsellor members. This report delivers the findings from the Supervision Working Group and has been peer reviewed by the AGNC membership in the UK and Eire and ratified by the AGNC Committee. It offers a working definition of genetic counselling supervision, gives an overview of some of the literature on supervision and concludes with practice recommendations.
Bookmarks Related papers MentionsView impact
American Journal of Human Genetics, 1998
Bookmarks Related papers MentionsView impact
American Journal of Human Genetics, 1999
Bookmarks Related papers MentionsView impact
Uploads
Peer reviewed publications
while "data sharing" for biomedical research is currently very high on the agenda of funders and policy makers, there is only little evidence on how people want their genetic and other health data to be used, by whom, and on what terms. A group led by Anna Middleton at Wellcome Trust Sanger Institute, Cambridge, designed a survey to help close this evidence gap. Everyone is invited to participate in this survey, regardless of your discipline and knowledge of this topic. And we would be hugely grateful if you could spread the word. Here is the link to the survey:
https://surveys.genomethics.org/action/Survey/uLNvE0BEStGoEB4hGQqKSg