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News

  • Nuffield Council Report: Non-invasive prenatal testing: ethical issues

    posted on 1st March 2017  |  0 Comments  |  Not tagged.

    Posted from: AGNC

    From Anna Wilkinson, Programme Officer with the Nuffield Council on Bioethics:

    The Nuffield Council on Bioethics today has today launched its new report Non-invasive prenatal testing: ethical issues which explores the ethical issues raised by non-invasive prenatal testing (NIPT).

    Over the course of our one-year inquiry we consulted a range of people with different interests in NIPT, including people with Down's syndrome and other genetic conditions, women who have undergone NIPT, healthcare professionals, charities and professional bodies. In the report we set out a number of conclusions, including the following:

    • NIPT is a powerful and important development. It can bring benefits, but it needs to be used with caution if it is to support reproductive autonomy, avoid harm, and promote equality and inclusion in society.
    • We support the use of NIPT in NHS screening for Down's, Edwards' and Patau's syndromes, provided that it is accompanied by accurate, balanced and non-directive information and support.
    • We support the use of NIPT to diagnose rare genetic conditions in the NHS. It is important for the NHS to ensure that it has sufficient genetic counselling resources.  
    • If this test is to be offered, both through the NHS and in the private sector, the Government must ensure it is meeting its duties to support disabled people and to tackle discrimination.
    • We are concerned about the way it is sometimes offered and presented in the private sector and recommend that the promotion and marketing of the tests should be more closely monitored and regulated.
    • NIPT should not be offered for less significant conditions or for sex determination (other than when a serious sex-linked condition is suspected).
    • NIPT should not be used for whole genome sequencing of fetuses, other than in exceptional cases where there is a particular concern about a condition of unknown cause.

    A short guide to the report, a one page summary and an 'Easy Read' version of the report are also available on the Nuffield Bioethics  website.

    AGNC response:

    'The AGNC welcomes the report's acknowledgement that genetic counselling services will need to grow to meet the information and support needs of those patients undergoing testing.'

    Peter Marks, AGNC Chair

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  • The AGNC is now on Twitter!

    The AGNC is now on Twitter!

    posted on 6th October 2016  |  0 Comments  |  Not tagged.

    Posted from: AGNC

    You can follow us using @theAGNC

    https://twitter.com/theAGNC

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  • Genetic Counsellor registration accredited by the Professional Standards Authority

    posted on 15th June 2016  |  0 Comments  |  Not tagged.

    Posted from: AGNC

     

    Dear Genetic Counsellors

    We are delighted to inform you that the GCRB was recently accredited by the Professional Standards Authority. As a profession we have worked towards this for a number of years and it has been achieved with the help of many Genetic Counsellors. We would like to thank everyone who has been involved at any stage along the way for their support, input and help.

    The press release will go out today. This is a time for celebration, so please share with your colleagues, patients and other interested parties. We will be updating the GCRB website very soon.

    With best wishes

    Diane Stirling

    GCRB Chair

     

     

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  • Workshop report: Data sharing to support UK clinical genetics and genomics services

    Workshop report: Data sharing to support UK clinical genetics and genomics services

    posted on 19th January 2016  |  0 Comments  |  Not tagged.

    Posted from: AGNC

    The ACGS and PHG foundation have published a report on data sharing to support clinical genetics services.

    View the report here, and keep up to date with the accompanying blog.

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  • New 3 Year MSc Genomic Counselling Programme

    New 3 Year MSc Genomic Counselling Programme

    posted on 14th January 2016  |  0 Comments  |  Not tagged.

    Posted from: AGNC

    A new Masters training programme in Genomic Counselling will start in September 2016.  The programme forms part of the Scientific Training Programme under the National School of Healthcare Science (NSHCS). 

    The 3 year traineeship combines an MSc in Genomic Counselling with work-based training in a Regional Genetics Centre supporting families with a range of genetic and genomic conditions.   It is designed to provide the education in the science of genomics and relevant counselling theory, alongside the experience required to practice as a Genetic Counsellor and to obtain professional registration.  There will be 15 funded training places beginning in September 2016, hosted at Regional Genetics Centres across England.  The university delivering the MSc component will be decided following a procurement process in 2016 which will be completed by the start of the academic year 2016-17.

    There is more detail about being a Genetic Counsellor on this website and at

    https://www.healthcareers.nhs.uk/explore-roles/life-sciences/genetic-counselling

    https://www.healthcareers.nhs.uk/explore-roles/life-sciences/genetic-counselling/entry-and-training-genetic-counselling

    Funding

    The STP training posts will be salaried at NHS Agenda for Change Band 6 salary (point 21) and student fees for the intercalated MSc will also be funded.  We would like to thank the Genomics Education Programme and Health Education England for supporting the posts.

    Eligibility

    Applicants to the STP must have an honours degree (1st or 2:1) in a pure or applied science area relevant to the specialism for which they are applying.  For genomic counselling a first degree in a biological science, psychology or nursing would be most relevant and applicants with such qualifications are welcomed.  Applicants with a relevant 2:2 degree will also be considered if they have an MSc or PhD of relevance.

    For applicants whose degree did not include completion of genetics modules, it will be expected that a short course in the science of human genetics has, or will be, completed.

    For the Genomic Counselling programme, experience working in a caring role is highly desirable, and candidates are unlikely to be shortlisted without this.  This may be through previous professional work (e.g. nursing/social work) or in a voluntary capacity and should be equivalent to 6-months full-time work. Awareness of, or basic training in, counselling may also be advantageous.

    For all STP applicants, evidence of research experience (e.g. in the form of a higher degree or equivalent evidence of scientific and academic capability), is considered desirable.

    Applications

    Enquiries about the application process should be directed to the National School of Healthcare Science.  hcsapplicants@wm.hee.nhs.uk 

    Enquiries about the role of a genetic counsellor can be directed to the AGNC if they are not answered on the website.

    Other opportunities to train to be a Genetic Counsellor

    Please note, the two existing MSc programmes in the UK at the Universities of Cardiff and Manchester will not themselves be recruiting new intakes of students in  2016.  However, these two programmes will continue to deliver their programmes to their continuing students (2015 intakes).  It is expected that the STP Genomic Counselling programme will run annually but numbers for 2017 are not yet decided.  There are other programmes available internationally but it would be important to check with the Genetic Counsellor Registration Board (GCRB) that these are accepted for registration as a Genetic Counsellor in the UK if you intend to practice here.  Please see:

    http://www.gcrb.org.uk/

    A note about Genetic Counselling and Genomic Counselling

    Previous MSc programmes for training Genetic Counsellors have been titled Genetic Counselling, but the title Genomic Counselling in this programme reflects the increased focus on the use of genomic information and technologies in healthcare.  Genetic counselling traditionally focused on how individual genes influence disease risk and predisposition.  Genomic counselling could be thought to involve examining all the genes and how they interact to help diagnose disease and determine prognosis, risk and the selection of therapeutic options.  Genomic tests are now being used more frequently in healthcare and can present complex ethical, psychological and social challenges for individuals and their families.  Those completing the STP Genomic Counselling training are currently expected to work under the professional title Genetic Counsellor.  (NHS Choices http://www.nhs.uk/conditions/genetics/Pages/genetic-testing-and-counselling.aspx, last accessed 06.01.2016). There is currently international debate about the future use of the professional title of Genomic Counsellor (Middleton, Aet al (2015) Mol Genet Genomic Med 3(2): 79-83).

     

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