AGNC Equity, Diversity and Inclusion Sub-Committee

Equity Diversity & Inclusion (EDI) Sub-committee

Vision, Mission and Values Statements

September 2023

These are intended to be read alongside, and to support, the AGNC Vision, Mission and Values.

OUR VISION

Our vision is that EDI values are supported and enacted in our work as genetic counsellors, centred to champion the needs of the underserved for the benefit of our patients and one another.

 OUR MISSION

Our mission as the EDI Sub-committee is to:

  • Encourage, educate, and constructively challenge behaviours within the genetic counselling workforce to foster EDI values in our work with patients and how we work with each other.
  • Use our position to advocate for those families with rare and genetic conditions whose voices may not be heard.

 OUR VALUES

Our values align with those of the AGNC

Our remit is both responsive and proactive. It will evolve and be updated in response to the changing needs of the workforce and requests from the AGNC membership.

To work towards this vision, mission and values, we have assessed our current remit as incorporating the following.

OUR REMIT

  • Act as an information and guidance resource on EDI issues for the AGNC professional body and its members.
  • Encourage and plan professional training and education which support AGNC members to foster EDI values.
  • Highlight and work to remove the barriers that prevent groups from accessing genetics services.
  • Provide resources to help genetics professionals access information that will enable them to meet the needs of minorities/groups within the community.
  • Work towards and support EDI solutions becoming embedded in genomic healthcare.
  • Ensure that EDI-related concerns, challenges and needs of AGNC members and genetics patients are fed back to the appropriate groups and that these are considered in future actions.
  • Champion the needs of the underserved, both within the workforce and patient groups to make their voices heard. 
  • Liaise with other bodies about EDI matters, including BSGM and GCRAB.
  • Work in line with the values of the AGNC.

 

Resources

Recordings of teaching sessions can be found in the members section.

UK recommendations for the management of transgender and gender-diverse patients with inherited cancer risks: https://www.nature.com/articles/s44276-023-00002-0.pdf

 

The erasure of transgender and intersex identities through fetal sex prediction and genetic essentialism: https://onlinelibrary.wiley.com/doi/epdf/10.1002/jgc4.1736

 

It’s Not Wrong, It’s Just Different, National Society of Genetic Counsellors Special Issue 2020 on cultural competence: https://onlinelibrary.wiley.com/doi/full/10.1002/jgc4.1235

 

Working with interpreters: guidelines for psychologists: https://www.bps.org.uk/node/1728

 

Communicating with People who have Intellectual Disability: The GeneEQUAL Educational Toolkit: https://www.genetics.edu.au/SitePages/Intellectual-disability-patient-communication.aspx

  

Rare youth revolution – new genetics and relationships project, My life, my genetics: https://www.rareyouthrevolution.com/mylifemygenetics

 

Most people share genetic test results with relatives even if the findings are normal: family communication in a diverse population: Click here

 

Effects of genetic counselor disabilities on their professional experiences: A qualitative investigation of North American counselors' perceptions:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10087727/

 

SCOpe Disability inclusion and Accessibility articles: https://business.scope.org.uk/article 

 

UK recommendations for the management of transgender and gender-diverse patients with inherited cancer risks: https://www.nature.com/articles/s44276-023-00002-0.pdf

 

Sub -Committee Members

Although the subcommittee works collaboratively without a hierarchical structure, a task-based model maintains the group's core functions.

Rachel Belk (Document management)

Danielle Newby (Administration)

Danielle is a Pre-registration Genetic Counsellor who has recently joined the team at the West Midlands Regional Genetics service, after completing her Genetic and Genomic Counselling MSc in 2021. She previously worked in a similar capacity for the North Thames Regional Genetics Services and, prior to this, as a Genomics Associate at Great Ormond Street Hospital, where she played a key role in the implementation of whole genome sequencing services in clinical genetics and other specialties within the trust. As one of a few Black Genetic Counsellor’s in the UK, Danielle has a keen interest in genetic conditions which affect Afro Caribbean communities and the impact of breast cancer on Black women. Danielle’s hope is to become a resource for, and empower, minority communities such as the Afro Caribbean community by helping to break down barriers that prevent this community, and others, from accessing genetics services.  

Sasha Henriques (Workforce Diversity)

Sasha is a principal genetic counsellor on sabbatical from Guy’s and St Thomas’s NHS Trust, UK and the course director of their 'Equality Diversity and Inclusion for Genomic Professionals' Training. She is Vice Chair of the Association of the UK Genetic Nurses and Counsellors (AGNC). Currently, she is carrying out PhD research developed by Wellcome Connecting Science and the Wellcome Sanger Institute to explore structural inequalities in genomic research through the use of race, ethnicity and ancestry categories. After her personal and professional experiences as a Black genetic counsellor working in the UK and South Africa, she designed and now delivers cross-cultural communication teaching for the MSc in Genetic Counselling at Cardiff University and the Scientist Training Programme (STP) for genomic counsellors in England.

Anita Matadeen (She/Her) (Liason for AGNC Main Committee)

Anita is a Registered Genetic Counsellor who works in the NHS and is currently the EDI Lead in her department.  Anita and Sasha started the EDI subcommittee in 2021.  Anita has been an AGNC committee member from 2018-2023 and has had a longstanding interest in EDI.  Her MSc thesis looked at the perception of genetics among British Sikhs.  Her particular interests include equity in access to the profession in both training to become a Genetic counsellor and patient access to genetics.  She is also a keen advocate for disability inclusion and community engagement.

David Walker (External professional body liaison)

David is a Principal Genetic Counsellor at Birmingham Women’s Hospital. He has a special interest in Inherited Cardiac Conditions and is a Training Officer for Genomic Counselling STP colleagues. He also has a role in the Genetics Diversity & Inclusion Group (GDIG) in his Trust, working on projects to benefit both staff and patients, included improved access to translated letters, and training/consulting staff around issues for LGBTQ+ individuals.

Josephine Giblin (External professional body liaison)

Jo Giblin is a Genetic Counsellor at the Bristol Regional Clinical Genetics Service. She has an interest in equality, diversity, and inclusion within genetics, and the NHS as a whole. In particular, she has focused on equipping genetics services to better meet the needs of trans patients, striving to make improvements to services to improve quality of care and access to care.

Beth Coad (She/Her) (Teaching and education development)

Beth is a principal genetic counsellor at St Georges NHS Hospital Trust. She also provides genomic, ethics and cultural competency education to undergraduate and postgraduate students and St Georges University of London.  Beth is a proudly queer genetic counsellor who specialises in supporting LGBTQIA+ patients and colleagues. 

Emily Clarke (She/Her) (Website Content) 

Emily is a Registered Genetic Counsellor at the charity Gene People. She has been running their national genetic conditions helpline since October 2014. Prior to this she worked as a genetic counsellor in the NHS at Manchester Centre for Genomic Medicine. Emily has a special interest in inherited retinal dystrophies having worked in the genetic eye clinic in Manchester and for the Macular Society. She has personal and professional experiences with sight loss and has a keen interest in developing inclusive services.

Joel Gould (He/Him), Registered Nurse, BN (Hons), PG Cert (Advanced Clinical Practice): (Communications)

Hello Everyone, my name is Joel and I am a registered nurse. My background is working as a clinical nurse specialist and nurse practitioner within Haematology and Cancer Services. I have more recently entered the world of Genomics working as a Genomic Nurse Practitioner on the Generation Study; a new national research study from Genomics England (GEL) looking at utilising genomic sequencing in newborns to screen for over 200+ genetic conditions. I joined the AGNC in 2023 after attending one of their conferences and I haven’t looked back. As a member of the LGBTQIA+ community and being in an interracial marriage, I am very passionate about ED&I. Therefore, I am excited to be part of the ED&I subcommittee and be involved in the incredible work they are doing for those accessing genomic care and supporting those healthcare professionals who work within Genomics.

Nilotpal Chauhan (She/Her) (Sub-committee member)

Nilotpal is a Registered Principal Genetic Counsellor (Education and Training lead) at the Leicester University Hospitals, NHS since 2022. Prior to this she worked as a Registered Genetic Counsellor at the Oxford University Hospital, NHS. Nilotpal has a special interest in the evolving Genetic Counsellor role in education and training sector. As a part of her current job role, she will be contributing towards GTAC (Genomics Training Academy) development. Nilotpal is passionate about providing equitable genomic services.

Smrithi Devaiah (Sub-committee member)

Smrithi is the Principal Genetic Counsellor for the Oxford Inherited Cardiac Conditions Service. Prior to specialising in cardiac genetics, she worked in the Oxford Centre for Genomic Medicine service alongside completing her GCRAB/AHCS Registration. She is passionate about mainstreaming genomics and reaching out to underrepresented communities to facilitate engagement with genomic services. Having grown up in India and working for the NHS for over 7 years has helped her appreciate the nuances of transcultural genetic counselling which she hopes to promote through her work for the EDI sub-committee.

Urvi SAVANIA (Sub-committee member)

Urvi is a registered Genetic Counsellor at the Leicestershire, Northamptonshire, and Rutland (LNR) NHS Genomic Service, specializing in neurogenetics and prenatal genetics. With both personal and professional experience in neurogenetics, she brings expertise and compassion to her role. Raised in Kenya with Indian heritage and having lived in several countries, Urvi has developed cultural competency as well as cultivated a deep understanding of diverse healthcare needs, including awareness of healthcare disparities. She is committed to advocating and championing for equity, diversity, and inclusion (EDI) in healthcare and make services more accessible to all individuals

Marie O'Donnell (Sub-committee member)

Marie is a Consultant Genetic Counsellor working in the Clinical Genetics Unit at Birmingham Women’s Hospital.  Her specialist interest is aortopathy. She completed her MSc in Healthcare Ethics so has always had a keen interest in ethics and sits as a member of the Hospital Ethics Committee.  Marie is a team leader for the education and training team and is always trying to improve standards, promote inclusion, improve diversity of the genomics workforce and create an environment where everyone feels valued and supported. 

The EDI Sub-committee welcomes contact from any AGNC member who would like to support our work in any way. You may not be looking to join the Sub-committee but may have ideas, projects or resources that you would like to work on or share with us.

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