Page URL: https://www.progress.org.uk/trusteesreport2015
This document is part of the Progress Educational Trust (PET)'s reports and accounts for the year ended 31 March 2015, as submitted to the Charity Commission and Companies House.
The charity's 2014, 2012, 2011, 2010, 2009, 2008 and 2007 reports and accounts are also available on this website.

Trustees' Report for the year ended 31 March 2015

The Trustees present their report for the period ended 31 March 2015.
The accounts have been prepared in accordance with the accounting policies set out in note 1 to the accounts and comply with the Companies Act 2006 and the and the Statement of Recommended Practice Accounting and Reporting by Charities (.pdf 1.39MB), issued in March 2005.

Structure, governance and management
The charity is a company limited by guarantee incorporated on 13 October 2010, its predecessor charity of the same name having been originally established in May 1992 as an unincorporated charitable trust.
The charitable company is governed by its memorandum and articles of association and is managed by a board of Trustees who are the directors of the company and appointed in accordance with the articles of association. The Trustees can appoint additional Trustees by invitation.
The articles of association state there must be a minimum number of Trustees in office of three and there is no maximum number.
The Trustees, who are directors of the company for the purposes of company law and who served during the period, were:
Fiona Fox (Chair)
Dr Jess Buxton
Simon Freeman (appointed 4 March 2015)
Professor John Galloway (retired 4 March 2015)
Tony Hickinbotham (retired 4 March 2015)
John Parsons
Dr Christine Patch
Professor Marcus Pembrey (retired 12 June 2014)
Laura Riley
None of the Trustees has any beneficial interest in the company. All of the Trustees are members of the company and guarantee to contribute the sum of £10 each in the event of a winding up.
All Trustees give freely of their time and no remuneration or benefits are paid to them.
All Trustees are kept up to date with ongoing developments in charity law and practice with appropriate training courses being considered if appropriate. It is the policy of the Trustees to provide new Trustees with all relevant information appertaining to the charity and its affairs upon induction in order that they can obtain a sufficient level of knowledge to enable them to perform their roles effectively.
The Trustees met three times during the year. The decisions of the Trustees are recorded by written minute. The Trustees refer to the Advisory Committee set up to assist them on matters relating to the activities of the charity.
The Trustees have assessed the major risks to which the charity is exposed, and are satisfied that systems are in place to mitigate exposure to those risks.

Objectives and activities/td>
The charity's object is to advance the education of the public in general (and in particular amongst those concerned with genetic disease and infertility) in the fields of human genetics, assisted conception and embryology including their ethical and regulatory aspects.
The Trustees review the aims, objectives and activities of the charity each year. There is a rolling evaluation of its activities at both Trustees' and Advisory Committee meetings.
In carrying out their review, the Trustees have referred to the Charity Commission's general guidance on public benefit, and in particular its supplementary public benefit guidance on the advancement of education. The Trustees judge how planned activities will contribute to the objects of the charity.

Management
The day-to-day management of the Trust is the responsibility of Sarah Norcross and her team.

Advisory Committee
The Advisory Committee has a depth of skills and experience in genetics, embryology, assisted conception, stem cell research, clinical practice, media, education, information technology, marketing, business, commercial practices, law, medical ethics and charity management.
At their meetings the Advisers discuss informally with each other, with staff and with Trustees and participate in a more formal session when specific questions are tabled and addressed. In addition, individual Advisers are consulted by the Director on an ad hoc basis.
The Committee met twice during the year. One of the Committee's members, Professor Colin Blakemore, was knighted in the Queen's Birthday Honours in June 2014 for 'services to scientific research, policy and outreach'.

Patrons
The charity's Patrons are Baroness Mary Warnock and Professor Marcus Pembrey.
Mary Warnock is a philosopher and Crossbench Peer. She chaired the Committee of Inquiry into Human Fertilisation and Embryology whose 1984 report - often referred to simply as the Warnock Report - is perhaps the world's most influential analysis of the ethics of assisted conception and embryo research.
Marcus Pembrey is one of the founders of PET, and was also a member of the charity's precursor organisation, the Progress Campaign for Research into Human Reproduction. He is Emeritus Professor of Paediatric Genetics at University College London's Institute of Child Health, and he served as served as PET's Chair of Trustees for more than 20 years.

Staff
During the period the charity had five employees, filling two full-time and three part-time positions.
Sarah Norcross, as Director, manages the day-to-day operations of the charity. Sandy Starr (Communications Officer), James Brooks (BioNews Science Editor) and Antony Blackburn Starza (BioNews Legal Editor) continued to work at PET.
Siobhan Chan resigned as PET/BioNews Genetics Editor in December 2014, and Kirsty Oswald was appointed in her place in January 2015.

Volunteers
PET has benefitted from a steady stream of highly motivated and professional volunteers. During 2014 and 2015, these volunteers have undertaken a broad range of activities, from maintaining the vast BioNews archive to assisting at PET events.
PET is an equal opportunity organisation, and is committed to a working environment that is free from any form of discrimination on the grounds of colour, race, ethnicity, religion, sex, sexual orientation or disability.

Main objectives, strategies and public benefits
The fundamental objective of the Progress Educational Trust (PET) is to create an environment in which ethically sound research and practice in genetics, assisted conception, embryo/stem cell research and related areas will thrive. The ultimate beneficiaries are families threatened by genetic disease or infertility, including parents aspiring to give birth to healthy children. One in six couples in the UK is affected by infertility and 2-3% of births are babies with either genetically determined or other congenital abnormalities.
The wellbeing of such patients is enhanced not only by direct medical help, but also by their fuller understanding of their condition. Assisted conception and genetics are fast-moving areas of science which are tightly regulated and the public struggles to keep up with the science, policies and ethics involved. PET seeks to educate not only those with a personal interest in these fields, but also those with a professional interest such as those involved in biological research or who deliver treatment or care.
PET's strategy to achieve these objectives in 2014-2015 has been to provide and encourage authoritative and balanced information, comment and debate on topical and contentious issues arising in its fields. PET has operated in the civic space between government, regulators, scientists, and practitioners, and those who are directly or potentially affected by developments in genetics, assisted conception and embryo/stem cell research. PET has sought to bring timely influence to bear on policymakers as new advances and issues have arisen.
PET has continued to do this through its flagship publication BioNews, through public debates and an Annual Conference, and through working with the media and other interested parties. BioNews is free of subscription charges and has a wide readership, estimated to be in the region of 18,000.
PET strives to make contact with a wide range of age and interest groups and to educate the public about the complex scientific, ethical and social issues which arise from genetics, assisted conception and embryo/stem cell research. PET's public events are mostly free of charge, and are supported by donations or grant funding. Where a charge is made, for example at PET's Annual Conference, concessions are offered for students, pensioners and those on benefits. All PET events are widely advertised, so as to attract a large and diverse audience.
Around 1,200 people attended events organised by PET this year, a figure which rises to several thousand when events that PET contributed to and exhibited and spoke at are included. Reports of PET's events, comment pieces by some of the event speakers and podcasts of interviews with the event speakers were published on BioNews in order that those who could not attend could nonetheless learn about each event online. This greatly extends the reach of PET events, and - together with the media coverage that these events attract - helps to bring informed debate to an even wider audience.
The benefits of PET's activities were carefully balanced against any potential harm or detriment. For example, PET's work on breast cancer during this financial year bought the charity into contact with a number of breast cancer patients and survivors, and with people who had experienced this disease in their family and who in some cases had experienced bereavement.
PET included a patient representative on the project's advisory panel, to help ensure that the subject was handled with due sensitivity, and to advise on the content and wording of materials. PET also forged links with a number of breast cancer charities and support organisations, so that people making enquiries could be directed elsewhere as appropriate. Crucially, a patient representative was included on the speaker panel at all four of the project's public events.
Related parties
Collaborations with reputable and established organisations are being maintained and expanded, in order to enable PET to reach a larger audience.
The charity continues to be and to be seen as a leading source of information and expertise on genetics, assisted conception and embryo/stem cell research, and shares its expertise by serving on several committees including:
the Human Fertilisation and Embryology Authority's National Donation Strategy Group;
the National Gamete Donation Trust's Advisory Council;
the Association of Fertility Patient Organisations;
the Ethics Advisory Board of the research project 'European Autism Interventions: A Multicentre Study for Developing New Medications';
the Editorial Board of the charity Autistica.
Additionally, this year saw Sarah Norcross become Co-Chair of the campaigning organisation Fertility Fairness (as discussed in detail below).
PET continues to enjoy excellent relationships with professional bodies such as the Association of Clinical Embryologists, the British Fertility Society (BFS), the British Infertility Counselling Association and the British Society for Genetic Medicine, as well as patient support groups such as the Donor Conception Network, Genetic Alliance UK, Infertility Network UK and the National Gamete Donation Trust. PET also maintained strong relationships with the major research funding bodies the Wellcome Trust and the Medical Research Council.
PET's work remains vital to these and other organisations, which all rely upon PET to keep up to date with the latest developments and to act as a hub for developing policy.
This financial year also saw PET forge new links with organisations working in the field of breast cancer, including patient support and advocacy groups (BRCA Umbrella and Independent Cancer Patients' Voice) and cancer charities (Breakthrough Breast Cancer, Breast Cancer Campaign, Breast Cancer Care, Cancer Research UK and the National Hereditary Breast Cancer Helpline).

Achievements and performance
BioNews
BioNews is the charity's free online news service and comment resource.
Between 1 April 2014 and 31 March 2015, there were 254,532 visits to the BioNews website. An average of 1.5 pages was visited per website visit, and visitors spent an average of 1 minute 15 seconds on the site.
The geographic reach of BioNews is wide.
UK: 90,239 visits
USA: 69,597 visits
Australia: 14,469 visits
Canada: 11,579 visits
India: 7,708 visits
BioNews has attracted a growing number of subscribers. Since 1 April 2014, the number of registered subscriptions to BioNews has risen to 6,565 and the circulation figure is circa 18,000.
BioNews writing scheme
The BioNews writing scheme, which trains postgraduate students in the art of science news writing, has continued to flourish and the number of places on the course was expanded. Life sciences, biomedical sciences and law PhD students from leading universities participate each term, gaining practical news writing experience under the expert supervision of BioNews editors.
During 2014-2015, a total of seven students from University College London and Queen Mary University of London completed the course. All of them provided positive feedback and most of them went on to join the pool of volunteer BioNews writers. PET continues to keep in regular contact with those who have completed the course, monitoring and encouraging the development of their careers.
BioNews highlights
BioNews continued to attract a wide variety of writers for its opinion pieces, including Baroness Delyth Morgan (Crossbench Peer in the House of Lords), Professor Susan Golombok (Director of the Centre for Family Research at the University of Cambridge) and Nick Jones (Director of Compliance and Information at the HFEA).
The top 10 most read BioNews articles during this financial year:
1. 46-year-old becomes oldest IVF mother to use own eggs
2. UK Government plans to legalise mitochondrial replacement for IVF
3. No more empty pates: stem cell therapy for baldness
4. Scientists engineer organism with expanded genetic alphabet
5. 'Angelina Jolie effect' sees breast cancer gene tests double
6. Unique human brain gene discovered
7. Big pharma investment in gene therapy continues with Sanofi deal
8. Judge awards birth mother custody of twins after Italian IVF mix-up
9. FDA fast tracks ALS stem cell therapy
10. Gene manipulation achieves organ regeneration in live mice for first time
PET continued to increase the reach of BioNews, and secured revenue by syndicating BioNews articles to other publications. Yet again, more advertisements were carried in BioNews during the year than in any previous year, with advertising becoming an increasingly important source of revenue for PET.
PET's 21st anniversary
PET held an event at the Wellcome Trust's headquarters on 21 October 2014 to celebrate the charity's 21st anniversary, and also to thank Professor Marcus Pembrey - who stepped down as Chair of Trustees after spending more than 20 years in the role - and welcome his successor, Fiona Fox. The event was attended by PET Trustees, staff, advisers, supporters and volunteers past and present, including members of the House of Lords.
PET promoted the fact that it was celebrating its 21st anniversary throughout the year, changing the charity's logo to a special anniversary version, and using the anniversary to enhance the prominence of the charity and raise additional funds.
Mitochondrial donation
Techniques have been developed that use IVF to avoid the transmission of mitochondrial disease, by exchanging a prospective mother's mitochondria with the mitochondria of a healthy donor. A change in the law was needed before such techniques could be used in treatment within the UK. PET has a longstanding interest in such techniques - even before the charity was founded in 1992, its founding Chair of Trustees Professor Marcus Pembrey was already involved in discussions about the hypothetical possibility of mitochondrial donation.
In this financial year, PET stepped up its campaigning on this issue and helped to bring about the longdesired change in the law.
In May 2014, the journal Reproductive Biomedicine Online published an article by Sarah Norcross entitled 'How and why mitochondrial replacement gets our vote'. This article was referenced in the Third Scientific Review of the Safety and Efficacy of Methods to Avoid Mitochondrial Disease through Assisted Conception, published by the HFEA in June 2014. The HFEA's report was the subject of a BBC News article which gave the last word to Sarah, who was quoted saying 'we urge the Government to press ahead and pass regulations to allow families blighted by mitochondrial disease to benefit as soon as possible'.
In July 2014, the UK Government published a report summarising and responding to its earlier public consultation on mitochondrial donation, with PET's response to the consultation quoted in the report. Sarah was also quoted widely in media coverage of this report, in articles published by BBC News, the Daily Telegraph, the Guardian and - overseas - by the Italian news agency Adnkronos and the Brazilian TV programme Fala Brasil. A team from the latter visited the PET office to interview Sarah, and the interview was broadcast on Brazilian TV.
Throughout 2014, PET kept up pressure on the Government to bring its Mitochondrial Donation Regulations before Parliament without any further delay. These regulations were finally laid before Parliament in December 2014, whereupon PET campaigned intensively to persuade Parliamentarians to vote in favour of the Regulations. PET helped to organise briefing meetings in the Houses of Parliament, and - in collaboration with the BFS - prepared two briefing documents for MPs and Peers, one on The Science of Mitochondrial Donation and one on The Ethics of Mitochondrial Donation.
Both the House of Commons and the House of Lords voted on the Regulations in February 2015. PET ensured that the public was brought right into the heart of these political proceedings, by organising a public debate on mitochondrial donation in the Houses of Parliament on the eve of the Commons vote. This event was hosted and introduced by the Shadow Health Minister, Luciana Berger MP, and was attended by MPs and Peers as well as patients, researchers, clinicians, journalists and members of the general public. The event had a clear impact in the House of Commons the following day, where it was referred to by MPs during the course of the debate (see below for details).
The House of Commons voted overwhelmingly in favour of permitting mitochondrial donation, as did the House of Lords a few weeks later (Sarah and Sandy Starr were present in the public gallery throughout the Lords debate). The German TV programme Mittagsmagazin came to the PET office to film an interview with Sarah about the vote in Parliament, while Sandy Starr was interviewed about the vote for the Podcast of Ideas, produced by the Institute of Ideas.
In short, the law was changed and PET played a crucial role in changing it. The Royal College of Nursing acknowledged this in an article in March 2015, in which it said: 'The Progress Educational Trust has done exemplary work in this area, first reporting on mitochondrial donation as a hypothetical possibility back in 1999. As research progressed and the possibility moved from theory to reality, the Trust continued to monitor closely the relevant scientific and ethical issues, winning hearts and minds in the process.'
Throughout this period, PET covered the issue of mitochondrial donation extensively in BioNews. Every key development was the subject of a news story on BioNews, and comment pieces were commissioned from both the most prominent supporters and the most prominent critics of mitochondrial donation. These authors included scientists, ethicists and patients. Books, events and radio and TV programmes about mitochondrial donation were also reviewed on BioNews.
Mitochondrial Donation: Is It Safe? Is It Ethical?
This event (which took place on 2 February 2015) sought to clarify the science, safety and ethics of mitochondrial donation for the benefit of both Parliamentarians and members of the public. The event took place in the Houses of Parliament on 2 February 2015 - the day before MPs voted overwhelmingly in favour of the Human Fertilisation and Embryology (Mitochondrial Donation) Regulations 2015, which permit mitochondrial donation to be used in clinical practice.
What was it about?
Conceiving a child via mitochondrial donation involves using biological material from three people - the child's parents, plus a female mitochondrial donor. This is why these techniques are sometimes referred to as 'three-person IVF'.
The Government's new Regulations make the UK the first country in the world to legislate for mitochondrial donation. The science and ethics of this area have been the subject of many years of high-profile discussion in the UK, including public consultations by the Nuffield Council on Bioethics, the HFEA and the Department of Health. The safety of mitochondrial donation has also been assessed in detail by three expert scientific reviews.
All of these exercises have concluded that it is acceptable - in terms of science, in terms of ethics, and in terms of support from the public - to permit the use of mitochondrial donation in treatment. Despite this, questions about and criticisms of mitochondrial donation continue to be raised from some quarters, and the relevant scientific and ethical considerations are not always easy to grasp. This event saw experts with different perspectives debate whether mitochondrial donation is safe and ethical.
Speakers
Frances Flinter (Professor of Clinical Genetics at King's College London)
John Harris (Professor of Bioethics and Director of the Institute for Science, Ethics and Innovation at the University of Manchester)
Dr David King (Founder and Director of Human Genetics Alert)
Philippa Taylor (Head of Public Policy at the Christian Medical Fellowship)
Chair
Dr Roger Highfield (Director of External Affairs at the Science Museum Group)
Audience
140 people attended. The audience included MPs, Peers and representatives of the Department of Health, the HFEA and Public Health England, as well as patients, researchers, clinicians, journalists and members of the general public.
Evaluation
PET received 69 evaluation forms from event attendees.
In summary:
99% thought the overall experience was 'excellent' or 'good';
85% thought the opportunity to voice their opinion was 'excellent' or 'good';
99% stated they were better informed;
56% had not attended a PET event before.
PET also asked in its evaluation forms 'Do you think parliament should vote in favour of allowing mitochondrial donation to be used in clinical practice?' 82% responded 'Yes', 6% responded 'No', and 12% responded 'Don't know'.
Freeform comments from attendees included:
'Great cross-section of views.'
'Very good chair. Excellent choice of speakers.'
'All speakers were passionate and spoke eloquently. Chair was excellent.'
'It was informative and stimulating. Please can PET do more on scientific, bioethical issues! As a bioethicist, it has been immensely useful/insightful.'
Media
The British Medical Journal reported on the event in an article entitled 'The person at the centre of threeperson IVF', and a journalist from New Scientist contributed to the debate from the floor. The chair of the event, Dr Roger Highfield, wrote an article about the event for the Science Museum entitled 'A remarkable moment for science'.
There was a large amount of social media activity around the event, which then segued into social media coverage of the following day's Commons debate and vote. This social media activity is documented on Storify at http://bit.ly/1MwZfqr
Impact
Several MPs referred to PET's event during the debate in the House of Commons the following day. Health Minister Jane Ellison introduced the Commons debate by quoting one of the speakers, Professor Frances Flinter. Shadow Health Minister Luciana Berger opened her speech by saying 'only last night, an event held in Committee Room 10 was attended by hundreds of people who are interested in the debate, and we heard representations from both sides'.
Other MPs who referred to PET's event in the Commons debate included Guy Opperman (Conservative MP for Hexham, who said 'the meeting last night...was very productive and helpful'), Liz McInnes (Labour MP for Heywood and Middleton, who said 'last night, it was my privilege to attend the debate on the safety and ethics of this technique') and Peter Bone (Conservative MP for Wellingborough, who complained that Parliament had allocated less time for the Commons debate than PET had allocated for the previous evening's public debate).
Fertility Fairness
In May 2014, PET Director Sarah Norcross became Co-Chair of the National Infertility Awareness Campaign, an organisation on whose Committee she had served for several years. Together with her fellow Co-Chair, Susan Seenan, Sarah then led the rebranding and relaunch of this organisation as Fertility Fairness in September 2014, and led the publication of an audit of the provision of fertility treatment the following month.
From the moment Sarah assumed her new role with this campaigning organisation she was in the media spotlight, commenting on the National Institute for Health and Care Excellence's new draft quality standard for the assessment and treatment of fertility problems. Sarah was also called upon throughout the year to comment on contentious fertility treatment funding decisions by clinical commissioning groups in Mid Essex, Thanet, York and elsewhere.
During the financial year, Sarah was interviewed on these matters by national and regional TV programmes (Good Morning Britain and Anglia News on ITV1, Look East and South East Today on BBC1), national newspapers (the Daily Mail, Daily Telegraph, Guardian and Observer), local newspapers (the Essex Chronicle, the Thanet Gazette, the York Press), national radio (You and Yours on BBC Radio 4, Sam Walker's programme on BBC Radio 5), local radio (Drivetime on BBC Radio London, the Breakfast Show and Drivetime on BBC Essex, Jonathan Vernon-Smith's show on BBC Three Counties Radio) and scientific journals (the British Medical Journal).
Sarah also met with politicians throughout the year to discuss policy concerning fertility treatment. This included a meeting with shadow health minister Luciana Berger, which prompted this politician to ask the Government a question in the House of Commons about the failure to provide armed forces personnel with publicly funded fertility treatment. Other politicians with whom Sarah met to discuss fertility funding included Toby Perkins (Shadow Minister for Small Business), Sir Roger Gale (Conservative MP for North Thanet) and Julian Sturdy (Conservative MP for York Outer).
Surrogacy
Surrogacy is an area of continuing interest to PET. It is now 30 years since the UK's Surrogacy Arrangements Act was passed into law, and a growing number of problematic cases involving surrogacy are reaching the High Court. The story of 'Baby Gammy', who was left in Thailand with the surrogate while his twin sister was taken by the intended parents to live with them in Australia, became global news and put the issue of international surrogacy arrangements in the spotlight.
In October 2014, Sarah Norcross went to the Houses of Parliament to attend a wide-ranging debate about surrogacy law initiated by Jessica Lee (Conservative MP for Erewash). Then in December 2014, Sarah and Jessica Lee - together with PET adviser Dr Kirsty Horsey - participated in a 'Surrogacy Supper Club' organised by the law firm Collyer Bristow. Other participants in this event included Sir Anthony Hayden, a High Court Judge in the Family Division.
In February 2015, Sarah gave a presentation about surrogacy to postgraduates studying Reproductive and Developmental Medicine at the University of Sheffield. And in March 2015, Sarah chaired a session at the annual UK/EU Surrogacy Conference, organised by the non-profit organisation Families Through Surrogacy.
Other fertility-related work
PET also worked on other aspects of fertility throughout the financial year.
In June 2014, Sarah Norcross was quoted in the Daily Mail on the issue of older men becoming sperm donors, arguing that in light of the latest research 'it is time for the guidelines on sperm donation to be reviewed'. In July 2014, PET collaborated with three other organisations - the BFS, Mumsnet and Sense About Science - to organise an online Q&A, where the public could ask questions about whether claims about fertility were backed by scientific evidence.
PET exhibited at fertility conferences including 'Fertility 2015' in Birmingham in January 2015 (organised jointly by the Association of Clinical Embryologists, the BFS and the Society for Reproduction and Fertility) and the HFEA's Annual Conference in London in March 2015. Attendees at these events were encouraged to subscribe to BioNews, and Sarah also used these events to recruit new comment authors for BioNews.
In February 2015, Sarah spoke on a panel chaired by Baroness Margaret Jay at a conference about fertility treatment, organised jointly by the International Society for Mild Approaches in Assisted Reproduction and the Centre for Reproduction and Advanced Technology. Sarah's presentation was entitled 'Public Funding for IVF in the UK: Is It Fair?'.
Autism
PET has a longstanding interest in the genetics of autism, and in broader aspects of autism and related policy and research.
In July 2014, Sandy Starr attended the launch of the charity Autistica's 'Ageing with Autism' research programme at the Royal Society of Medicine, where he was interviewed for a film about this research. Sandy also contributed two articles to the charity's newsletter during this financial year.
Meanwhile, Sandy continued to serve on the Ethics Advisory Board of the world's largest autism research project - 'European Autism Interventions: A Multicentre Study for Developing New Medications', or 'EUAIMS'. He gave presentations about EU-AIMS at the annual meeting of Autistic UK in September 2014, and to an audience of community paediatricians in February 2015.
Sandy organised and chaired a public event about EU-AIMS - 'Treating Autism: The Promises, Perils and Politics of Pharmaceutical Intervention' - at the Institute of Psychiatry, Psychology and Neuroscience in October 2014. Two podcasts of the event were produced and made available online.
As a result of his work on the event, Sandy was invited to join a roundtable discussion about autism in the Houses of Parliament in March 2015. This discussion was organised by the Shirley Foundation and hosted by Baroness Pola Uddin, and was introduced by the Foundation's Dame Stephanie Shirley and by the National Autistic Society's President Jane Asher.
Other Parliamentary and policy work
In addition to the activities discussed above, Sarah went to the Houses of Parliament in June 2014 for the Summer Reception of the All-Party Parliamentary Group on Medical Research, where speeches were given by ministers Earl Frederick Howe and David Willetts and by Lord Leslie Turnberg.
In August 2014, Prime Minister David Cameron announced £300million worth of government investment in the 100,000 Genomes Project (100KGP), and said that the UK would 'lead the world in genetic research within years'. PET worked with Genomics England, the company established by the Government to carry out the 100KGP, to involve patients and the public. This work is discussed in detail below.
This financial year also saw PET's Annual Conference become a subject of discussion in Parliament for the first time. This is discussed in the next section.

Annual Conference
The Commercialisation of Life
PET's annual conference was held on 2 December 2014 at University College London's Institute of Child Health.
What was it about?
The PET discussion conference 'The Commercialisation of Life', which took place at London's Institute of Child Health on 2 December 2014, explored questions and controversies surrounding the role of commerce in genetics and fertility treatment. In the PET tradition, following introductory presentations the bulk of each session's running time was devoted to soliciting questions and comments from the audience.
The conference began with a lecture from controversial bioethicist Professor Julian Savulescu. He discussed his theory of 'procreative beneficence', which suggests that where relevant genetic technology is available, parents have a moral obligation to select children who are most likely to have the best life.
In the second session, a panel of speakers discussed the future of healthcare in a world where genetics, technology and 'Big Data' are increasingly and ripe for commercial exploitation. This discussion could not have been better timed, as the company 23andMe launched its personal genome service in the UK on the day of the conference.
With the next session, the focus shifted to fertility treatment. A panel of speakers discussed whether and how IVF can be provided more cheaply, and debated the evidence for the efficacy of some of the procedures which are offered to fertility patients. The aim of this session was to generate discussion about the increasing cost of fertility treatment in the UK, and to juxtapose this with the Walking Egg Project, which aims to bring low-cost IVF to less economically developed countries.
The conference concluded with Professor Lord Robert Winston, the prominent fertility expert and Parliamentarian, discussing the impact of infertility on patients - both financially and emotionally.
Speakers
Dr Clare Gerada (GP and former Chair of the Royal College of General Practitioners)
Dr Stuart Hogarth (Senior Research Fellow at King's College London's Department of Social Science, Health and Medicine)
Dr Yacoub Khalaf (Director of the Assisted Conception Unit at Guy's Hospital)
Sarah Norcross (Director of PET)
Willem Ombelet (Professor and Head of Obstetrics and Gynaecology at St Jans Hospital and the Genk Institute for Fertility Technology)
Vivienne Parry (science writer and broadcaster, and Head of Engagement at Genomics England)
John Parsons (Trustee at PET and Founder of the Assisted Conception Unit at King's College Hospital)
Julian Savulescu (Professor of Practical Ethics and Director of the Oxford Uehiro Centre for Practical Ethics at the University of Oxford)
Dr Kári Stefánsson (Founder and Chief Executive of deCODE Genetics)
Peter Thompson (Chief Executive of the Human Fertilisation and Embryology Authority)
Lord Robert Winston (Professor of Science and Society and Emeritus Professor of Fertility Studies at Imperial College London, and Labour Peer in the House of Lords)
Chairs
Baroness Ruth Deech (Crossbench Peer in the House of Lords, Chair of the Bar Standards Board and former Chair of the Human Fertilisation and Embryology Authority)
Jeremy Laurance (health writer, and former Health Editor at the Independent newspaper)
Fiona Fox (Chair of Trustees at PET, and Founder and Director of the Science Media Centre)
Sarah Franklin (Professor of Sociology and Director of the Reproductive Sociology Research Group at the University of Cambridge, and Chair of the Anne McLaren Memorial Trust)
Audience
There were 208 attendees, representing a wide diversity of interests and organisations. Policymakers and regulators who attended included representatives of the UK Government's Department of Health, the Scottish Government's Child and Maternal Health Division, the HFEA, NHS Choices and the British Medical Association.
Many fertility clinics and hospitals sent representatives to the conference including Access Fertility, Birmingham Women's Hospital, Bourn Hall Clinic, the Centre for Reproductive and Genetic Health, Create Fertility, Great Ormond Street Hospital, Guy's Hospital, Hammersmith Hospital, Heatherwood and Wexham Park Hospitals, King's College Hospital, Lewis Fertility Testing, Liverpool Women's Hospital, the London Bridge Fertility, Gynaecology and Genetics Centre, the London Women's Clinic, Manchester Fertility Services, Nottingham City Hospital, Nuffield Health Woking Hospital, St Bartholomew's Hospital, St George's Hospital, St Peter's Hospital, University College London Hospital, University Hospital of Wales and Whipps Cross University Hospital.
Undergraduates, postgraduates and academics attended the conference from universities across the UK, covering a range of disciplines. These universities included Barts and the London School of Medicine and Dentistry, De Montfort University, Goldsmiths University of London, Imperial College London, King's College London, Royal Holloway University of London, St George's University of London, St Mary's University, University College London and the Universities of Birmingham, Cambridge, Cardiff, Kent, Liverpool, Manchester, Newcastle, Oxford and Westminster. Academics also travelled from overseas to attend the conference representing Aalborg University, Ghent University, Istanbul University and the Royal College of Surgeons in Ireland.
Charities and patient organisations that sent representatives to the conference included Infertility Network UK, the National Gamete Donation Trust, the Donor Conception Network, Antenatal Results and Choices, Cancer Research UK and Independent Cancer Patients' Voice. A number of fertility patients also attended independently.
Evaluation
PET received 46 evaluation forms from conference attendees.
In summary
99% thought the whole experience was 'excellent' or 'good';
96% thought the programme was 'excellent' or 'good';
94% thought the opportunity to voice their opinion was 'excellent' or 'good';
88% stated they were better informed;
53% had not attended a PET event before.
Freeform comments from attendees included:
'I like the equal balance of talks to debates - a good opportunity for people to ask questions and voice their opinions and keeps the audience attentive and interested.'
'Very well organised conference. Really inspiring as a medical student to understand the current issues with IVF and genetic counselling.'
'PET conferences are always brilliant. Past experience at other conferences have proven this.'
'Wonderfully provocative start, outstanding presentations, fascinating content even for a layperson.'
'Thank you all for putting together such an interesting and informative conference. The speakers and chairs were terrific, the welcome was warm - I ended the day feeling that I had a treat.'
Media
The conference was reported in the Financial Times (in an article entitled 'Shades of grey in the ethics of designer babies'), in the British Medical Journal (in an article entitled 'Development of tests for disease using genetic markers is slower than expected'), and in Research Fortnight (in an article entitled 'Genomics pioneer questions UK project').
Impact
The conference was the subject of discussion in the House of Lords in February 2015. In a debate about a proposed amendment to the government's Deregulation Bill, Lord Winston reiterated criticisms of the HFEA that he had made at the conference. Later in the same debate, Lord David Alton discussed the conference specifically, mentioning PET and quoting statements made at the conference by Lord Winston and also by PET Trustee John Parsons.
Several of the conference speakers (including Sarah Norcross) were interviewed by playwright Jemma Kennedy, who attended the conference as part of her research writing a play about the fertility sector - The Bank of Britain - for the National Theatre. A patient who attended the conference asked Lord Winston a follow-up question about ovarian reserve, and both her question and Lord Winston's response were published on the website of the Genesis Research Trust (a charity Lord Winston chairs).
There was a large amount of social media activity around the conference, which is documented on Storify at http://bit.ly/1LUHyCk
Support
The conference benefited from financial support including an unrestricted educational grant from Merck Serono, and additional support from the Anne McLaren Memorial Trust Fund, the Edwards and Steptoe Research Trust Fund, Ferring Pharmaceuticals, the London Women's Clinic and the Medical Research Council. The Trustees are very grateful for all the support received.

'Breast Cancer: Chances, Choices and Genetics' project
In April 2014, PET launched a project entitled 'Breast Cancer: Chances, Choices and Genetics'.
When the actress Angelina Jolie wrote publicly about her decision to undergo a risk-reducing double mastectomy, breast cancer captured the world's attention. This project sought to use the high level of public interest in Jolie's mastectomy as a starting point to explore and clarify breast cancer and risk - for the benefit of the general lay public, current and prospective patients, and professionals.
Two questions surrounding Jolie's mastectomy were at the centre of the project. First, to what extent was her situation representative? Second, to what extent was her response proportionate? These questions were used to examine diverse areas related to breast cancer including cancer predisposition genes genetic counselling and testing, personalised medicine, responsiveness to chemoprevention and treatment, nosology, prophylaxis, screening, insurance and patents.
The project explored the distinctions between absolute and relative risk, population and individual risk, lifetime risk and risk over a specific time period, and the chance and burden components of risk. It also explored the difficult question of whether and in what sense early detection of breast cancer, due to screening, might change our understanding of what the disease actually is.
Other topical developments were used to frame discussion, such as the US Supreme Court's unanimous ruling (shortly after Jolie's announcement of her mastectomy) that breast cancer predisposition genes cannot be patented. The project explored the ramifications for patients of this decision, and of the differences between the intellectual property regimes of the USA and the UK.
Finally, the project tackled the issue of insurance - which is often assumed to be a prohibitively impenetrable or tedious subject for lay discussion, but which is nonetheless of significant concern to patients and their families.
Of the 16 people who spoke at the project's public events, four - one at each event - were current or former breast cancer patients. The others included a breast surgeon, an epidemiologist (with a family history of breast cancer), three geneticists (one of whom also specialised in epigenetics), an insurance specialist (who previously worked as a GP), an obstetrician (responsible for the UK's first baby born following preimplantation genetic diagnosis for breast cancer predisposition), a Parliamentarian (also chief executive of a breast cancer charity), two other senior figures at breast cancer charities, a solicitor specialising in life sciences, and a statistician specialising in cancer screening.
Each of the project's four events was chaired by someone who combined professional authority with an engaging and sensitive chairing style - a genetic counsellor, a general practitioner, a professor of medical jurisprudence and a geneticist. PET also collaborated on the project with breast cancer charities and patient organisations.
Relative Risk: Breast Cancer and Genetics
This event (which took place on 3 April 2014) focused on the genetics and science of breast cancer. Inherited breast and ovarian cancer predisposition such as Angelina Jolie's was the starting point for the discussion, and the event went on to consider genetics in relation to breast cancer more broadly. The impact of next-generation sequencing was addressed, including whether people who have their genomes sequenced should be automatically notified of BRCA mutations, and the ramifications of researchers now being able to sequence the whole genomes of cancer cells.
Speakers
Kerry Andrew (patient and carrier of a BRCA1 gene mutation)
Diana Eccles (Professor of Cancer Genetics and Director of the Clinical Trials Unit at the University of Southampton)
Gareth Evans (Professor of Medical Genetics and Cancer Epidemiology at the University of Manchester)
Baroness Delyth Morgan (Crossbench Peer in the House of Lords and Chief Executive of Breast Cancer Campaign)
Gordon Wishart (Consultant Breast and Endocrine Surgeon)
Chair
Dr Christine Patch (Trustee at PET and Consultant Genetic Counsellor and Manager at Guy's Hospital)
Risk Assessment: Breast Cancer, Prediction and Screening
This event (which took place on 8 May 2014) focused on different ways of conceptualising and understanding breast cancer risk, and addressed the national breast screening programme and the recent Government-commissioned review of this programme's benefits and harms. The event also addressed the reproductive decisions of people who carry breast cancer predisposition alleles, and options for ensuring that these are not transmitted to their children. Embryo testing for BRCA1 and BRCA2 mutations is licensed by the HFEA, and has been used in the UK to ensure that children are born without these mutations.
Speakers
Wendy Watson (Founder and Director of the National Hereditary Breast Cancer Helpline)
Paul Serhal (Founder and Medical Director of the Centre for Reproductive and Genetic Health)
Stephen Duffy (Professor of Cancer Screening at Queen Mary University of London)
Klim McPherson (Professor of Public Health Epidemiology at the University of Oxford)
Chair
Dr Ann Robinson (GP and health commentator for the Guardian and BBC Radio 4)
Risk Management: Breast Cancer, Business and Patents
This event (which took place on 5 June 2014) focused on the interface between breast cancer and the commercial world, including the patentability of genes linked to breast cancer, and the way breast cancer is dealt with by the insurance industry. A moratorium on the use of genetic information means that the result of predictive genetic tests cannot affect directly patients' insurance premiums within the UK, but this fact is not universally known or understood, and in any case does not assuage all concerns. The event also explored concerns about the UK's care.data project, which will make NHS patient data available to commercial third parties.
Speakers
Dr Angela Kukula (Director of Enterprise at the Institute of Cancer Research)
Alexander Denoon (Partner at Lawford Davies Denoon)
Dr Ian Cox (Member of the Association of British Insurers' Genetics Panel)
Jenny Dunlop (Counselling Practitioner)
Chair
Graeme Laurie (Professor of Medical Jurisprudence at the University of Edinburgh)
Breast Cancer Risk: Facts, Fictions and the Future
This event (which took place on 3 July 2014) focused on three topics that had been decided by audiences at the previous three events, who were asked what they thought the final event should address. The three topics were facts about men and breast cancer (after Australian politician Nick Greiner was diagnosed with breast cancer and had a mastectomy), fictions about breast cancer risk (patients are often confronted with alarming and often contradictory advice about risk factors), and the future of breast cancer (particularly epigenetics, and claims that this field will be useful in predicting, preventing and treating breast cancer).
Speakers
Eluned Hughes (Head of Public Health at Breakthrough Breast Cancer)
Fay Schopen (Journalist and former patient)
Dr James Flanagan (Research Fellow at Imperial College London's Department of Surgery and Cancer)
Gareth Evans (Professor of Medical Genetics and Cancer Epidemiology at the University of Manchester)
Chair
Dr Jess Buxton (Trustee at PET)
Audience
315 people attended the project's four public events, one-quarter of whom attended more than one event in the series. The audience included representatives of Parliament, cancer charities and patient support and advocacy groups, as well as patients, researchers, clinicians, journalists and members of the general public.
Evaluation
PET received 202 evaluation forms from event attendees.
In summary:
94% thought the overall experience was 'excellent' or 'good';
89% thought the opportunity to voice their opinion was 'excellent' or 'good';
92% stated they were better informed;
43% stated that they had changed their views as a result of attending;
58% had not attended a PET event before.
Freeform comments from attendees included:
'Fantastic speakers - very interesting and engaging.'
'Very good panel, broad in knowledge and interesting. Good audience too!'
'There was perfectly balanced range of views and it was fantastic having someone with a BRCA mutation to offer her views.'
'Fascinating context, clearly and succinctly delivered by an expert panel. A good length of Q&A was valuable and well chaired. An outstanding event - very informative and balanced.'
'Excellent new information. Learned very important new research-based facts in seeking to manage family history, questions I haven't been provided with answers for previously.'
Comments from event speakers and others who were involved in the project included:
'A really worthwhile event. Thanks for organising it.' (Professor Diana Eccles, geneticist)
'I thoroughly enjoyed the evening, which was very well organised and well attended.' (Professor Gordon Wishart, consultant breast and endocrine surgeon)
'I greatly enjoyed the meeting.' (Professor Klim McPherson, epidemiologist)
'I just wanted to say, what a fantastic event you and the team put on.' (Caroline Presho, Director of BRCA Umbrella)
'The first event was really excellent - informative and fast-moving.' (Lord David Lipsey, Labour Peer in the House of Lords)
'The event was most enlightening.' (Fay Schopen, journalist and patient)
Outputs and outcomes
Factsheets
PET prepared factsheets containing key definitions for each of the four events, so as to provide attendees who were less familiar with breast cancer with an understanding of specialist terms. This helped ensure that the events were neither bogged down in definitions, nor hampered by talking at cross purposes.
Glossary
All definitions from the factsheets were incorporated into the BioNews Glossary, via which definitions are woven into BioNews articles both in the archives and on an ongoing basis.
Podcasts
Four 20-minute podcasts were produced, to accompany each of the four events. These podcasts were interviews with all the panel speakers conducted by James Brooks, and featured unique content not heard at the debate.
With these podcasts, and with articles about each event published on BioNews and elsewhere, the project was successfully brought to a wider international audience.
Media
Summaries of the proceedings of each event were published on BioNews, alongside other articles by people who spoke at the events or were otherwise involved in the project. Additionally, two of the events were the subject of articles published by the Wellcome Trust on its blog.
PET also had good reason to believe that the project had an impact on the way journalists think about and report on breast cancer. The project's events were attended by journalists from diverse publications including the British Medical Journal, the Evening Standard, Good Housekeeping and Pink Ribbon. PET also fielded queries about the project from other outlets, including the Mail on Sunday.
Poll
Attendees at all four events were asked to suggest questions that they wanted PET to put to the wider public, so that the issues raised by the project could be further explored. PET chose seven questions from these suggestions to include in an online poll.
The poll elicited responses from 878 people - the highest ever number for one of PET's online polls - and these were then summarised and discussed in two articles published on BioNews, which in turn prompted further discussion of the relevant issues.

The 100,000 Genomes Project
In 2014 and 2015, PET conducted public engagement work for the UK Government's 100,000 Genomes Project (100KGP), which aims to sequence 100,000 whole genomes from around 75,000 participants by 2017. PET's work - which was funded by Genomics England, the company established by the Government to carry out the 100KGP - centred on two public events and an online poll.
PET also conducted a survey about the 100KGP at the British Society for Genetic Medicine's Annual Conference (which took place in Liverpool in September 2014), as well as promoting its 100KGP work at other related events. These other events included 'Genome Sequencing: What Do Patients Think?' (organised by Genetic Alliance UK as part of 'GenomeSeqWeek' in February 2015), and the launch of the world's largest community-based genetics study 'East London Genes and Health' (at the Science Media Centre in March 2015).
This work also led to PET Trustee Dr Jess Buxton and Sandy Starr meeting with two of the technical leaders of the UK branch of the Personal Genome Project - another big data genomics project with some similarities to the 100KGP - to discuss ways of engaging with the public and professionals.
Genomic Medicine Needs You - Do You Need Genomic Medicine?
This event (which took place on 16 October 2014) focused on what the 100KGP has to offer patients, and what patients have to offer the 100KGP. It explored whether unrealistic expectations could create an unethical inducement to participate in the project, and also how best to deal with incidental findings - that is, genomic discoveries with implications for the participant's health, that are not pertinent to the condition that led to participation in the first place.
Speakers
Sir John Chisholm (Chair of Genomics England)
Michael Parker (Professor of Bioethics and Director of the Ethox Centre at the University of Oxford)
Richard Stephens (cancer patient and Chair of the National Institute for Health Research/National Cancer Research Institute's Consumer Liaison Group)
Dr Simon Woods (Codirector of Newcastle University's Policy, Ethics and Life Sciences Research Centre)
Chair
Vivienne Parry (Head of Engagement at Genomics England)
Genetic Conditions: How Should Your DNA Be Used in the 100KGP?
This event (which took place on 6 November 2014) focused on the commercial aspects of Genomics England's mission and partnerships. It addressed the fact that Genomics England will sell both public and private licences to researchers who wish to use 100KGP data for health purposes, and also explored questions and concerns about data security. The event grappled with the fact that despite every precaution being taken, there can never be a cast-iron guarantee that the identity of 100KGP participants will not be revealed.
Speakers
Professor Mark Caulfield (Chief Scientist at Genomics England)
Professor Tim Hubbard (Head of Bioinformatics at Genomics England)
Dr Mark Sheehan (Research Fellow at the University of Oxford's Ethox Centre)
Dr Sarah Wynn (Information Officer at Unique, the Rare Chromosome Disorder Support Group)
Chair
Dr Christine Patch (Trustee at PET and Consultant Genetic Counsellor and Manager at Guy's Hospital)
Audience
315 people attended the two events. The audience included representatives of many different public and private initiatives in genomics, as well as patients, researchers, journalists and members of the general public.
Evaluation
PET received 145 evaluation forms from event attendees.
In summary:
88% thought the overall experience was 'excellent' or 'good';
85% thought the opportunity to voice their opinion was 'excellent' or 'good';
95% stated they were better informed;
73% stated that they would be willing to participate in the 100KGP;
78% had not attended a PET event before.
Freeform comments from attendees included:
'Great chair, really well organised event and great range of speakers.'
'Speakers were clever and engaging. Chair gave plenty of opportunity for audience participation, and speakers gave informative, full answers.'
'Such an interesting range of views across the board. This topic affects us all, and all questions were answered very well.'
'Great variety of expertise and perspectives.'
'Great to have the Genomics England view with the patient view, bioinformatics view and neutral ethics view.'
Outputs and outcomes
Media
There was substantial media interest in both events.
Journalists who covered the events included the Science and Environment Editor of BBC Radio 4's Today programme (which recorded and broadcast excerpts from the 'Genetic Conditions' event's opening presentation), a reporter from the Financial Times (who contributed to the debate from the floor and published a subsequent article entitled 'DNA project reaches out to researchers and doctors'), a reporter from Research Fortnight (who attended both events and then published an article entitled 'Genomics England offers remote access to 100,000 genomes'), and a team from Front Line Genomics (which published articles about both events accompanied by photos taken at the events).
Other attendees at the two events included the Science and Technology Editor of the Observer, the Deputy Editor of New Scientist magazine and journalists from BBC News, Saga magazine and the Pharmaceutical Press. PET also fielded queries about the events from the Guardian, the Telegraph, the Lancet, Channel 4 News, the BBC Radio 4 programme World at One, and BBC Radio 5 Live.
There was a large amount of social media activity around the events, which then segued into social media coverage of PET's Annual Conference (where the 100KGP continued to be discussed, alongside related issues). This social media activity is documented on Storify at http://bit.ly/1HJWYZe
Poll
Attendees at both events were asked to suggest questions that they wanted PET to put to the wider public, so that the issues raised by the project could be further explored. PET chose five questions for an online poll which launched in February 2015, and was still open and receiving responses at the close of the financial year.
Policy
As part of its work on the 100KGP, PET helped to broker discussion between Genomics England and policymakers including Parliamentarians.
The 100KGP was debated during PET's preceding 'Breast Cancer: Chances, Choices and Genetics' project, at whose launch event Baroness Delyth Morgan called on Genomics England to review its decision not to focus on breast cancer in the 100KGP. Similarly, when PET met the MP Cheryl Gillan at a discussion of autism in Parliament in 2015, she drew attention to her remarks in the House of Commons expressing concern at the 100KGP's lack of attention to epilepsy. In both instances, PET conveyed these concerns to Genomics England, which then provided clarification and reassurance.
PET's 100KGP events also had an impact on policy, with attendees including the Human Tissue Authority, the Laboratory of the Government Chemist, the National Institute for Health Research and the Nuffield Council on Bioethics. The 'Genetic Conditions' event was mentioned in the report The Collection, Linking and Use of Data in Biomedical Research and Healthcare: Ethical Issues, published by the Nuffield Council on Bioethics in February 2014. This report incorporated responses to an earlier public consultation on data (one of these responses was submitted by PET), and the report's recommendations included some that were directed specifically at Genomics England.

Other public events
Do Genes Matter? Families and Donor Conception
This event (which took place on 22 May 2014), discussed family, kinship, gender, sexuality, assisted conception and genetics. It was organised in partnership with the University of Manchester's Morgan Centre for Research into Everyday Lives, to disseminate and debate the findings of the Centre's 'Relative Strangers' project.
What was it about?
More than 35,000 children have been born in the UK as a result of donor conception since 1991. Since then, our knowledge of genetics has increased substantially, with the advent of whole genome sequencing and a better grasp of the genetic factors that can predispose people to certain medical conditions. But beyond our physical health, what does our improved understanding of genetics mean for our understanding of family?
Speakers
Natalie Gamble (solicitor and Founder of Natalie Gamble Associates and Brilliant Beginnings)
Anneke Lucassen (Professor of Clinical Genetics and Coordinator of Clinical Ethics and Law teaching at the University of Southampton)
Carol Smart (Professor of Sociology and Codirector of the Morgan Centre for Research into Everyday Lives at the University of Manchester)
Erika Tranfield (Director and Cofounder of Pride Angel)
Chair
Walter Merricks (Chair of Trustees at the Donor Conception Network)
Audience
159 people attended. The audience included representatives of charities and patient organisations, as well as patients, researchers, journalists and members of the general public.
Evaluation
PET received 76 evaluation forms from event attendees.
In summary:
94% thought the overall experience was 'excellent' or 'good';
99% thought the opportunity to voice their opinion was 'excellent' or 'good';
96% stated they were better informed;
35% stated that they had changed their views as a result of attending;
45% had not attended a PET event before.
Freeform comments from attendees included:
'Very informative and eye-opening! Great attempt to cover such an ocean of questions and information.'
'Very well organised. I was impressed with the timekeeping, the clarity of all the speakers. The Q&A at the end was stimulating, interesting and informative.'
'Very good mix of presentation topics, and some speakers were exceptionally clear thinking on complex issues. I could have listened to Natalie Gamble and Carol Smart for an hour each!'
Outputs and outcomes
A 20-minute podcast was produced to accompany the event. In this podcast James Brooks interviewed all the panel speakers. This podcast, and the related articles published in BioNews and elsewhere, made the event issues discussed at the event accessible to a much wider audience.
The event was discussed on Fertility Matters, a website run by author and patient advocate Kate Brian.

Other activities
Work with schools and universities
This year a group of students from Stowe School, Buckinghamshire attended the PET's Annual Conference. Their biology teacher sent the following comment to PET.
'The children came back to school buzzing with excitement about everything they had heard and seen. It is so wonderful for them to see real science and understand just how important economics and politics can be to scientific decisions. Please thank all the speakers for being so welcoming and making the children feel part of the event. Most impressive of all is that pupils that weren't even on the trip have been telling heads of department what a good thing it was and what an amazing experience their friends had. We hadn't even got on the bus before they asked if we could come to your next conference.'
PET's work took the charity into a variety of educational institutions ranging from schools to universities. In July 2014, Sandy Starr was a judge at the National Final of the Debating Matters sixth-form debating competition. He also participated in a balloon debate at the British Library, to help inspire pupils competing in the National Final.
July 2014 also saw Sarah Norcross attend the launch the 'Inside ELSI' project - led by researchers at the Universities of Birmingham, Nottingham and Sheffield who are investigating how ethics, law and sociology relate to health technologies - and participate in an event at De Montfort University Leicester about reproductive choice in relation to mitochondrial disease.
Towards the end of 2014 Sarah became particularly busy with events at universities across the UK, including:
the University of Manchester, where she gave a School of Law seminar entitled 'Regulating Mitochondrial Replacement Therapy: Ethics and Science in Parliament';
De Montfort University Leicester, where she contributed to an event entitled 'Egg Donation in Europe: Evidence from Research, Policy and Practice';
King's College London, where she gave a presentation entitled 'Hype, Hope and Headlines: How Assisted Reproductive Technology is Reported in the Media and the Impact This Has on Patients';
Lancaster University, where she spoke on 'The Future of Donation' at an Institute of Medical Ethics conference entitled 'Deconstructing Donation'.
Then in February 2015, Sarah gave a presentation about surrogacy to postgraduates studying Reproductive and Developmental Medicine at the University of Sheffield.
In March 2015, PET exhibited at 'Vaccines and Infectious Diseases', a public engagement day for schools and the broader public organised by the British Society for Gene and Cell Therapy at the University of Oxford's Museum of Natural History. Hundreds of sixth-formers visited an exhibition stand manned by Sarah and Sandy, where they were encouraged to subscribe to BioNews and were presented with two challenges - a 'Gene-ius Quiz' testing their knowledge of genetics, and a more difficult headline-writing competition with the chance to win book vouchers.
PET's exhibition stand was also visited by a member of the Humans of Oxford team, which publishes online photos and accompanying text about people encountered in and around Oxford. Sarah and Sandy were profiled by Humans of Oxford, and used the opportunity to discuss PET's work on mitochondrial donation.
Progress Educational Trust website
Between 1 April 2014 and 31 March 2015 there were 90,926 visits to the PET website, which is a 108% increase from the previous year. The BioNews page on the PET website continues to be the most popular page (with 75,344 page views), followed by the homepage.
New content and features continued to be added to the Progress Educational Trust website throughout the year. Particularly striking was the number of original podcasts PET made available on its website - five podcasts, which accompanied PET's events on breast cancer and donor conception and featured interviews with the speakers at these events.
This week at the Progress Educational Trust
This feature continued to be updated on the homepage each week, highlighting PET's activities. PET believes that this feature demonstrates transparency and accountability, by making information about PET's activities easily accessible. The feature also provides users with an incentive to visit the website regularly.
Google Adwords
PET retained its Google Adwords Grant throughout this year, enabling PET to place Google Adwords on Google's Result Page completely free of charge. Between April 2014 and March 2015, Google Adwords sent 72,611 visitors to the PET website.
Social media
PET and BioNews have continued to have a strong, and growing, presence on the social networking platforms Facebook and Twitter.
There has been a 31% increase in the number of followers of @BioNewsUK on Twitter (which stands at 2,636), and a 23% increase in the number of 'likes 'of the Progress Educational Trust's Facebook page (which stands at 856).
This year, PET began to use Storify for the first time. This is a powerful tool for capturing social media activity, on both Twitter and Facebook, that surrounds a particular event or development. PET made use of Storify to capture social media activity around its annual conference, around its work with Genomics England, and around its work on mitochondrial donation.
British Society for Genetic Medicine
PET's media expertise continued to be employed by the British Society for Genetic Medicine (BSGM). Again, PET ran the press office at the BSGM's Annual Conference, held in Liverpool in September 2014 and attended by Sarah Norcross, Siobhan Chan and PET Trustee Dr Christine Patch.
As a result, several pieces of research presented at the conference were covered by the British Medical Journal, Cystic Fibrosis News Today, Englemed Health News, Midwives magazine, Pharmaceutical Analysis and Pharmaceutical Business Review, while PET itself published several news stories covering the conference in BioNews.
PET also manned an exhibition stand throughout the conference, promoting BioNews and conducted a poll about the 100KGP on behalf of Genomics England.
The Fertility Show
PET exhibited at the Fertility Show in November 2014. 3,698 people attended this event, most of whom were members of the public experiencing difficulty conceiving. The event provides a valuable opportunity for PET to speak to UK fertility patients face-to-face. Visitors to PET's exhibition stand were invited to subscribe to BioNews, and were given a complimentary copy of PET's Guide to Genetics.
PET Director Sarah Norcross presented a seminar at the Fertility Show entitled 'Headlines about Fertility Treatment - Which, If Any, Should You Believe?'.
Besides engaging with patients and laypeople, PET also made a point of visiting all of the other exhibition stands at the Fertility Show, to learn from exhibitors and to give them literature about PET and its work. The charity was able to do this at the same time as exhibiting and speaking at the event by enlisting the help not only of staff, but also of the charity's volunteers and advisers as well as Trustees.
Other events
In June 2014, Sandy Starr gave a presentation about PET's work at the annual Press Officers' Conference organised by the Medical Research Council and the Wellcome Trust. Other speakers at this event included the BBC's Head of Science Development, Nigel Paterson. It was especially gratifying to hear Nigel tell the audience that in all the interviews he had conducted over the years, the interviewee who had been best at explaining complicated science clearly for lay viewers was PET's outgoing Chair of Trustees, Marcus Pembrey.
In July 2014 Sandy spoke at a debate entitled 'Artificial Intelligence vs Humans' organised by ManTownHuman, and in October 2014 Sandy was involved in two debates at the annual Battle of Ideas festival at the Barbican Centre - he chaired the debate 'Dose of Reality: The Ethics and Politics of Drug Development', and he spoke at the debate 'Big Data: Big Danger?. Films of all three of these debates have been made freely available online.
PET staff also attended many other conferences and events throughout 2014-2015. This was valuable for reasons including:
networking;
raising the profile of PET and BioNews and promoting PET events and initiatives;
evaluating the suitability of speakers and experts for future PET events;
commissioning commentaries for BioNews;
keeping abreast of developments and horizon scanning.

Financial review
The net incoming resources for the period amounted to £99,266 (2014: £17,175).
Incoming resources amounted to £232,555 (2014: £141,259) which is an increase of 65% in comparison to the previous financial year. The apparent significant jump is as a result of grant funding awarded in the year of which part is to be utilised in the next financial year. Of the total incoming resources £201,536 (2014: £86,490) was generated from charitable activities as detailed in note 4 and accounted for 87% (2014: 61%) of total income. The remainder of the incoming resources was generated from donations and these totalled £30,905 (2014: £54,708).
Resources expended amounted to £130,889 (2014: £124,084) which is an increase of 5% compared to the previous financial year. The main expenditure item continued to be salaries which at £101,535 (2014: £97,958) accounted for 78% (2014: 79%) of total resources expended.
We are grateful for grant funding received from the Wellcome Trust which contributed to the significant increase in incoming resources. This coupled with sponsorship income, consultancy fees and the continued support and contributions from Friends of PET helped boost the charity's financial standing through out the year.
Net assets at the Balance Sheet date were £163,735 (2014: (£69,469) and all funds held were unrestricted.
Future financial viability of the charity is dependant on the continued financial support of grant funding bodies, clients for PET's writing and training work, sponsors of their events, advertisers and private donors.
Future viability will also depend upon PET's many greatly valued Friends, Volunteers and Advisers, without whose support the charity could not survive.

Future Developments
'A TripAdvisor for Fertility Clinics' event
PET will organise an event at the Royal College of Obstetricians and Gynaecologists, with sponsorship from the BFS, to discuss the HFEA's plans to publish patient feedback on clinics - plans which have drawn comparison with the popular travel website TripAdvisor.
Mitochondrial donation
Now that the Mitochondrial Donation Regulations have been passed by both Houses of Parliament, the HFEA will have to decide how to implement the Regulations before they come into force in October 2015. PET will continue to take a keen interest in this subject, and will respond in detail to any relevant consultations.
Fertility-related events
PET plans to organise more public events on fertility-related subjects including an event on gamete donation (with the National Gamete Donation Trust), an event on egg cryopreservation for non-medical reasons (with the Anne McLaren Fund), and events where particular fertility treatment techniques are demystified and where the efficacy and merits of these techniques are debated by clinicians with contrasting views.
100KGP
PET hopes to secure funding from Genomics England to undertake more public engagement work for the 100KGP.
Annual Conference
The overarching theme of PET's Annual Conference will be modification of the human germline, covering mitochondrial donation and also the burgeoning and contentious field of genome editing.
Funding
PET will apply for several grants in 2015-2016, and intends to generate revenue from writing and from advisory and consultancy work with other organisations.
The charity has seen an increase in advertising revenue, generated by the PET and BioNews websites and the BioNews email newsletter. It will work at sustaining and increasing this advertising revenue.
A major objective will be increasing reserves as a hedge against uncertain income, and less reliance will be placed on project funding where this is possible.
Auditors
Gerald Edelman were appointed auditors to the company. A resolution proposing that they be reappointed will be put to the members.

Statement of disclosure to the auditors
Each of the Trustees has confirmed that there is no relevant audit information of which the charity's auditors are unaware. They have further confirmed that they have taken all the steps that they ought to have taken as Trustees in order to make themselves aware of any relevant audit information and to establish that the charity's auditors are aware of that information.
This report is prepared in accordance with the small company regime under section 419(2) of the Companies Act 2006.

Approval
This report was approved by the Trustees on 11 December 2015 and signed on their behalf by Fiona Fox (Trustee).