It is estimated that around 1 in 6,500 children born every year in the UK have a serious mitochondrial disorder. Mitochondria are structures that provide human cells with the energy they need to function. Genetic faults in the mitochondria can cause serious (potentially fatal) mitochondrial diseases affecting the organs and tissues that use most energy including the heart, brain, muscles and liver.
In July 2014, the Government announced its intention to allow the clinical use of two new treatments to prevent serious mitochondrial disease. Neither treatment has been used in humans and both are currently prohibited in the UK under the Human Fertilisation and Embryology Act 2008 which prohibits the implantation of any egg or embryo that has had its DNA altered. However, there is provision within the Act for Parliament to approve regulations to permit this for a single specified purpose: "to prevent the transmission of serious mitochondrial disease". The Government has consulted on draft regulations and a refined version of these are expected to be debated by both Houses shortly.
The new treatments are controversial for a number of reasons. For instance, some have questioned whether they will prove to be safe in all patients. Others point to the fact that both treatments involve changes to the genetic material that will be passed on not only to the intended child, but to subsequent generations born to girls resulting from the treatments. This raises potential concerns about the ethical basis of the treatments as well as practical issues about the need for very long-term follow up of multiple generations of children.
This seminar aims to inform the debate on the proposed regulations by giving parliamentarians access to the scientists developing the new treatments, the regulators who may have to implement them and those at the forefront of the debate about their potential ethical and social impacts.
2.00 Chair’s introductionBaroness O'Neill of Bengarve
2.10 Mitochondrial disease and ways of preventing it
Professor Doug Turnbull, Director Wellcome Trust Centre for Mitochondrial Research
2.25 Potential safety considerations
Professor Robin Lovell-Badge, MRC National Institute for Medical Research
2.40 Potential ethical considerations
Professor Mike Parker, Director Ethox Centre, University of Oxford
2.55 Issues of personal and family identity
Professor Jackie Leach Scully, Professor of Social Ethics & Bioethics, Newcastle University
3.10 Future regulatory mechanisms
Hannah Verdin, Head of Regulatory Policy, HFEA
3.25 Panel discussion of questions from the audience
3.50 Chair’s concluding remarks
To attend please register at eventbrite by clicking here or telephone 020 7219 8377.