Helpline 07939 046 030
Freephone 0300 102 17 22*

The Royal Society - A Quest for the perfect Human…? A debate on the implications of human genome editing

21 November 2019

The Royal Society - A Quest for the perfect Human...? A debate on the implications of human genome editing

Nerve Tumours UK were delighted to be invited to attend the debate held at The Royal Society on Tuesday 12 November 2019. The charity was represented on all fronts by Karen Cockburn, Charity Director, Alice Rosen, Fundraising Manager, Carolyn Smyth, Lead Specialist NF Nurse and Richard Goode, Trustee.

The Royal Society is a Fellowship of many of the world's most eminent scientists and is the oldest scientific academy in continuous existence. The Society’s purpose is to recognise, promote and support excellence in science for the benefit of humanity.

The debate was very well attended with many interested, and some quite distinguished, professionals; and other organisations such as Genetic Alliance and Genetic Disorders UK. This promised to be a fascinating insight into the world of cutting-edge research, and we were not disappointed.

So, what was it all about? I will attempt to enlighten you.

CRISPER cas-9 is technology that allows scientists to make changes to DNA in cells that could potentially allow us to cure genetic diseases.

CRISPR CAS-9 is an acronym:

C-  Clustered 

R-  Regularly

I-   Interspaced

S-  Short

P-  Palandromic

R-  Repeats
cas-9 is a protein.

Jennifer Doudner, a Biochemist and Emmanuele Charpentier, a French Professor and Researcher specialising in genetics and microbiology were collaborating on an entirely different project when they realised the potential implications of their discovery.

The CRISPR - cas9 discovery was co-incidental to a basic research project aimed at discovering how bacteria fights viral infections. Many bacteria have in their cells an adapted immune system allowing them to detect viral DNA and destroy it. 

Part of the CRISPR system is a protein known as cas-9. It is able to seek out and cut / degrade viral DNA. It was as a result of this that the researchers realised that these functions could be used in genetic engineering to delete or insert specific bits of DNA into cells with incredible precision. Therefore, this could offer opportunities to do things that had not been possible before.

The programme for the debate

Genome engineering is not new and has been in development since the 1970's and some of the first applications for this included copying and manipulating DNA. However, this technology raises a number of ethical questions and considerations, and we must think carefully about the unintended consequences as well as those intended. A global pause or Moratorium has been called for before there is any clinical application of the CRISPR technology,

Jennifer Doudner forecasts that applications will become available and possibly even approved within the next 10 years. We have a huge responsibility to consider carefully both the unintended consequences as well as the intended impacts of such a scientific breakthrough.

The evening, hosted by Bristows LLP, and chaired by Baroness Joan Bakewell, welcomed four leading scientists to discuss the topic and take part in the debate:

Dr. Helen O’Neill, Lecturer in Reproductive and Molecular Genetics, University College London

Dr. Nessa Carey, Imperial College London and author of Hacking the Code of Life and Junk DNA: 

Professor Robin Lovell-Badge, Head of Laboratory of Stem Cell Biology and Developmental Genetics, The Francis Crick Institute

Dr. Rodger Novak, Co-founder and President CRISPR Therapeutics  

This was a fascinating and thought provoking debate, which can be viewed in full on YouTube or below.

If you would like to know more you can go to the society's web page by following the link below.

Filter News

Filter by Date
Category
Reset

Breast Cancer in Neurofibromatosis Type 1

Professor Gareth Evans takes us through a summary of the current research around the links between NF1 and breast cancer

Read More

Bromley NF1 Info Day 2024

Join us for an insightful NF1 Information Day in Bromley on November 23, 2024. Expert talks, Q&A, and community connection.

Read More

Joanna’s Story

Joanna updates us on her breast cancer diagnosis, and how she's going above and beyond in her fundraising and fitness.

Read More

Andrea’s Story

Andrea shares her long journey for an NF diagnosis and why she wants her story out there.

Read More

Gisela’s Story

Gisela shines a light on how NF2 has impacted her life on campus.

Read More

Advice for Students with NF1, NF2-Schwannomatosis, and Schwannomotosis

Expert advice, information and resources to help you get the most from university.

Read More

Ella’s Story

Ella shares her insights into campus life with NF, her victories and hurdles and the importance of self belief.

Read More

Georgia’s Story

Georgia shares her her story of self celebration, the importance of difference and how perseverance is key.

Read More

Nottingham INFormation Day a Big Thank You

Photos, feedback and more from the Nerve Tumours UK INFormation day in Nottingham.

Read More

Masterclasses in NF: Constitutional Mismatch Repair Deficiency Syndrome as Differential Diagnosis to NF1/Legius Syndrome - Prof. Dr. Katharina Wimmer

Constitutional Mismatch Repair Deficiency Syndrome as Differential Diagnosis to NF1/Legius Syndrome

Prof. Dr. Katharina Wimmer, Medical University of Innsbruck

Masterclasses in NF: Rare NF1-Associated Tumors in Adults - Eric Legius & Prof. Ellen Denayer

Masterclasses in NF: Rare NF1-Associated Tumors in Adults

Eric Legius, MD, PhD, University Hospital Leuven

Prof. Ellen Denayer, University Hospital Leuven

Masterclasses in NF: Optimising Hearing Outcomes in NF2-Related Schwannomatosis - Simon Freeman

Masterclasses in NF: Optimising Hearing Outcomes in NF2-Related Schwannomatosis

Simon Freeman, MPhil FRCS, Manchester Royal Infirmary and Salford Royal Hospital

Masterclasses in NF: NF1 Dermatological Manifestations - Pierre Wolkenstein, Laura Fertitta & Sirkku Peltonen

Masterclasses in NF: NF1 Dermatological Manifestations

Pierre Wolkenstein, MD, PhD, Hopital Henri-Mondor, Paris, France

Laura Fertitta, MD, Hôpital Universitaire Henri Mondor

Sirkku Peltonen, MD, PhD, University of Gothenberg, Sweden

Masterclasses in NF: Breast Cancer in NF1 - Gareth Evans

Masterclasses in NF: Breast Cancer in NF1

Gareth Evans, MD, University of Manchester, UK

Masterclasses in NF: Pain in Non-NF2-Related Schwannomatosis - David Pang

Masterclasses in NF: Pain in Non-NF2-Related Schwannomatosis

David Pang, MD, ChB. Guys and St Thomas' Hospital NHS Trust, London

Masterclasses in NF: Distinguishing Non-NF2-Related from NF2-Related Schwannomatosis - Clinical and Genetic Approaches - Said Farschtschi

Masterclasses in NF: Distinguishing Non-NF2-Related from NF2-Related Schwannomatosis - Clinical and Genetic Approaches

Said Farschtschi, MD, University Medical Center, Hamburg-Eppendorf, Germany

Masterclasses in NF: NF1 Pre-Implantation Genetic Diagnosis - Eric Legius & Prof. Ellen Denayer

Masterclasses in NF: NF1 Pre-Implantation Genetic Diagnosis

Eric Legius, MD, PHD, University Hospital of Leuven, Belgium

Prof. Ellen Denayer, University Hospital of Leuven, Belgium

NF2 Working Together: from a tentative diagnosis and beyond

Understanding the impact that a tentative diagnosis has on a parent. Information and access to the existing NTUK and Specialist Nerve Tumours medical and non medical care network.

NF1 Working Together Part 2: from a tentative diagnosis and beyond

Understanding the impact that a tentative diagnosis has on a parent. Information and access to the existing NTUK and Specialist Nerve Tumours medical and non medical care network.

NF1 Working Together Part 1: from a tentative diagnosis and beyond

Understanding  the impact that a tentative diagnosis has on a parent. Information and access to the existing NTUK and Specialist Nerve Tumours medical and non medical care network.

Masterclasses in NF: Surgery in NF2 - Michel Kalamarides & Andrew King

Masterclasses in NF: Surgery in NF2

Michel Kalamarides, MD, PhD, Hôpital Pitié-Salpêtrière, Paris, France

Prof Andrew King, MBBS FRCS FRCS(SN), Salford Royal Hospital, Manchester, United Kingdom. Member of the MAB of Nerve Tumours UK

Masterclasses in NF: Cognition and Behaviour in NF1: Phenotype and Treatment Approaches - Shruti Garg, Andre Rietman

Masterclasses in NF: Cognition and Behaviour in NF1: Phenotype and Treatment Approaches

Dr Shruti Garg, MBBS, MRCPsych, MMedSci, PhD, Royal Manchester Children’s Hospital, United Kingdom. Member of the MAB of Nerve Tumours UK

Andre Rietman, PhD, Erasmus University Medical Center, Rotterdam, Netherlands

Masterclasses in NF: Emotional Challenges in NF1, NF2 and Schwannomatosis - Susie Henley, Thomas Pletschko & Verena Rosenmayr

Masterclasses in NF: Emotional Challenges in NF1, NF2 and Schwannomatosis

Susie Henley, DClinPsy, PhD, Guy’s and St Thomas’ NHS Foundation Trust, London UK

Thomas Pletschko, PhD, Medical University of Vienna, Austria

Verena Rosenmayr, Clinical Psychologist, Medical University of Vienna, Austria

Masterclasses in NF: NF1 Pediatric Management - Rianne Oostenbrink

Masterclasses in NF: NF1 Pediatric Management

Rianne Oostenbrink, MD, PhD, Erasmus University Medical Center, Rotterdam, Netherlands

Masterclasses in NF: Associated Glioma in Children - the Optic Pathway and Beyond - Amedeo Azizi

Masterclasses in NF: Associated Glioma in Children - the Optic Pathway and Beyond

Amedeo Azizi, MD, PhD, Head of the Paediatric Neurofibromatosis Program and Paediatric Neuro-Oncology Program, Medical University of Vienna, Austria

Masterclasses in NF: NF1 Orthopedic Manifestations - Eric Legius and Christophe Glorion

Masterclasses in NF: NF1 Orthopedic Manifestations

Eric Legius, MD, PhD. Head of Clinical Genetics Department of the University Hospital Leuven, Belgium

Christophe Glorion, MD, PhD, Department of Paediatric Orthopedic and Traumatologic Surgery, Hopital Necker-Enfants Malades, Paris, France. 

Masterclasses in NF: NF1 Malignant Peripheral Nerve Sheath Tumours - Rosalie Ferner and Viktor-Felix Mautner

Masterclasses in NF: NF1 Malignant Peripheral Nerve Sheath Tumours

Prof Rosalie Ferner, Consultant Neurologist and Lead Clinician for Neurofibromatosis, Guy's and St. Thomas' NHS Foundation Trust, London. Member of the MAB of Nerve Tumours UK and Trustee of Nerve Tumours UK

Viktor-Felix Mautner, MD, PhD. University Medical Centre in Hamburg-Eppendorf, Germany. Head of NF Outpatient Department

Masterclasses in NF - Neurofibromatosis Type 1: Cutaneous Neurofibromas - Pierre Wolkenstein and Sirkku Peltonen

Masterclasses in NF - Neurofibromatosis Type 1: Cutaneous Neurofibromas

Pierre Wolkenstein, MD, PhD. Hopital Henri-Mondor, Paris, France. Head of the Department of Dermatology

Sirkku Peltonen MD, PhD. University of Gothenberg, Sweden. Professor of Dermatology

INFER (International NF Educational Resources) is a series of online educational lectures for medical professionals by leading neurofibromatosis experts. The Masterclasses take place online approximately once a month, each on a different topic, and include real-time interaction between the expert presenter and the participants. The presentations are conducted in English, with real-time audio interpretation available in 6 additional languages: French, German, Italian, Portuguese, Russian, and Spanish. A recording of each INFER masterclass is then be made available online in each language for those who could not attend an event. INFER is an initiative of Children’s Tumor Foundation Europe, supported by an educational grant from AstraZeneca. https://ctfeurope.org/research/masterclasses-in-nf

BPNA Keynote Lecture - Prof Rosalie Ferner - Neurofibromatosis 1 in the 21st Century

‘Neurofibromatosis 1 in the 21st Century’

Keynote Lecture at the 48th British Paediatric Neurology Association Annual Scientific Meeting on 21st January 2022

Prof Rosalie Ferner, Consultant Neurologist and Lead Clinician for Neurofibromatosis, Guy's and St. Thomas' NHS Foundation Trust, London. Member of the MAB of Nerve Tumours UK and Trustee of Nerve Tumours UK