Page URL: https://www.progress.org.uk/trusteesreport2014
This document is part of the Progress Educational Trust (PET)'s reports and accounts for the year ended 31 March 2014, as submitted to the Charity Commission and Companies House.
The charity's 2013, 2012, 2011, 2010, 2009, 2008 and 2007 reports and accounts are also available on this website.

Trustees' Report for the year ended 31 March 2014

The Trustees present their report for the period ended 31 March 2014.
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
Professor Marcus Pembrey (Chair)
Dr Jess Buxton
Fiona Fox (appointed 27 February 2014)
Professor John Galloway
Tony Hickinbotham
Dr Christine Patch (appointed 27 February 2014)
John Parsons
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 five times during the year. The decisions of the Trustees are recorded by written minute. Daily management of the Trust is the responsibility of Sarah Norcross and her team. The Trustees also refer to the Advisory Committee set up to assist them on matters relating to the activities of the charity.
Professor Marcus Pembrey was one of the founders of PET in 1992 and has made an enormous contribution to its success and development over the years. He stepped down as Chair of Trustees and from the board in June 2014 and was succeeded as chair by Fiona Fox, Founding Director of the Science Media Centre and a longstanding member of the Advisory Committee.
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
The charitable company'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.
In carrying out this 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 (.pdf 299KB). The Trustees consider how planned activities will contribute to the objects of the charity.
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.
Advisory Committee
The Advisory Committee has a breadth 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.
The Committee met once during the year. 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.
Patron
The charity's Patron is Baroness Mary Warnock, philosopher and Crossbench Peer in the House of Lords. Baroness Warnock chaired the Committee of Inquiry into Human Fertilisation and Embryology, whose 1984 report (.pdf 769KB) - 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. The UK authorities still abide by this report's recommendations.

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 result in 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 a fuller understanding of their condition. Assisted conception and genetics are fast-moving areas of science which are tightly regulated and the public struggle 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 people 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 2013-2014 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 which is 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.
More than 400 people attended PET events held during this year, a figure which rises to several thousand when events that PET contributed to and exhibited and spoke at are included. Reports of these 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 read 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 Annual Conference this year addressed twins and multiple births, and the audience may have included parents whose children had died or have been left disabled as the result of a multiple pregnancy. Care was taken to ensure that the relevant issues were handled with due sensitivity.
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 Infertility Awareness Campaign's Committee;
the National Gamete Donation Trust's Advisory Council;
the Association of Fertility Patient Organisations;
the Advisory Group for the project 'Assessing Child Welfare under the Human Fertilisation and Embryology Act: The New Law', at the University of Kent's Centre for Parenting Culture Studies;
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;
the Autism Ethics Group at King's College London's Centre of Medical Law and Ethics.
PET continues to enjoy excellent relationships with professional bodies such as the Association of Clinical Embryologists, the British Fertility Society, 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's work remains vital to these and other organisations, which all rely upon PET to keep abreast of the latest developments and to act as a hub for developing policy.

Achievements and performance
BioNews
BioNews is the charity's free online news service and comment resource.
Between 1 April 2013 and 31 March 2014, there were 288,935 visits to the BioNews website, which is an average of 792 visitors per day and an increase of 16% compared with the previous year. An average of 1.5 pages was visited per website visit, and visitors spent an average of 1 minute 58 seconds on the site.
The geographic reach of BioNews is wide.
UK: 97,065 visits
USA: 82,283 visits
Australia: 17,081 visits
Canada: 13,706 visits
India: 7,865 visits
BioNews has attracted a growing number of subscribers. Since 1 April 2013, the number of subscriptions to BioNews has risen to 6,267 and an estimated readership of circa 18,000.
BioNews writing scheme
The BioNews writing scheme, which trains postgraduate students in the art of 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 2013-14, a total of nine students from University College London and Queen Mary University 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 700: Remembering Robert Edwards
The death in April 2013 of Professor Sir Robert Edwards, a Nobel Laureate and one of the pioneers of in vitro fertilisation (IVF), was a major subject of coverage in BioNews at the beginning of the year 2013-2014. Without the achievements of Professor Edwards, assisted conception as we know it would not exist.
The landmark 700th edition of BioNews was published in the week following Professor Edwards' death, and was dedicated to him. It included articles about Professor Edwards' legacy by Sarah Norcross and by PET Adviser Professor Martin Johnson (who was Professor Edwards' first graduate student), as well as a review of Professor Edwards' book 'A Matter of Life: The Story of IVF - A Medical Breakthrough'.
PET also solicited tributes to Professor Edwards from those who knew and worked with him, and collated these into an online book of condolence.
Other BioNews highlights
BioNews continued to attract a wide variety of writers for its opinion pieces, including both the Chair (Lisa Jardine) and Chief Executive (Peter Thompson) of the HFEA, and the General Secretary (Professor Cathy Warwick) of the Royal College of Midwifery.
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.
June 2013 saw the BioNews article 'Five million IVF babies born to date, study says' republished in the book Fertility and Reproduction, part of the Issues series for 14-18 year olds from Independence Educational Publishers. November 2013 saw BioNews given a particularly high profile, when a BioNews article written by Professor Alison Murdoch - 'IVF: The Real Moral Debate' - was quoted in the Sunday Times news story 'Fertility clinic defeats legal limit on number of twins and triplets'.
Throughout the year, several testimonials for PET and BioNews were received from eminent figures in PET's orbit, and these were published on BioNews alongside fundraising appeals. Those who sent testimonials included Professor John Harris, Director of the University of Manchester's Institute for Science, Ethics and Innovation, who said: 'PET is not afraid to tackle difficult subjects and is adept at framing the discussion of these even when they involve issues of personal and community sensitivity.'
There was a marked increase in readers availing themselves of the BioNews website's 'Have Your Say' feature, using this to append their own comments to articles. This was especially noticeable with articles about donor conception, particularly those that were related to the Nuffield Council on Bioethics (NCoB)'s 2014 report on donor conception and to PET's own project 'When It Takes More Than Two'.
Parliamentary and Policy Work
A highlight of PET's year came in September when the charity received a letter of support for its work from the Prime Minister, David Cameron. In his letter, the Prime Minister endorsed PET's initiative to establish an All Party Parliamentary Group on Genetics and Healthcare. The year 2013-2014 also saw PET involved in various events held in and around Parliament and Whitehall, including one event at 10 Downing Street (details below).
As well as attending to particular areas of policy that fall within its remit, PET also took an active interest in Government policy affecting small charities. In June 2013, PET's Director Sarah Norcross went to the Cabinet Office in Whitehall to attend a Policy Day Reception, hosted and introduced by Nick Hurd (Minister for Civil Society) and organised by the Foundation for Social Improvement (FSI).
In January 2014, Sarah - together with PET's Communications Officer, Sandy Starr - participated in a roundtable discussion with Nick Hurd, again organised by the FSI in London. At this event, Sarah took the opportunity to ask the Minister about the extent to which charities can emulate approaches taken by the private sector, and the extent to which charities should retain a more distinct role in society.
Genomic data and health data
This year saw the storage and use of genomic data, and of health data more broadly, become an increasingly prominent topic in policy and discussion. A number of high-profile public and private initiatives in this area were proposed, launched or accelerated, with two of the most ambitious examples - the 100K Genome Project and care.data - being the work of the UK Government.
The many challenges and questions raised by these initiatives figured large in PET's policy work for the year. Storage and use of genomic data was a dominant theme of 'Genomes and Societies: Global Challenges around Life Sciences', the final conference of the Genomics Network, which was wound up following a 10-year existence during which it had many dealings with PET. The conference took place in April/May 2013, featured PET's Chair of Trustees Marcus Pembrey as a panel speaker, and was attended by Sarah Norcross.
In October 2013, Sarah Norcross attended a day of engagement events organised by Genomics England, the company established by the UK Government to oversee the 100K Genome Project. The day was divided into two halves - one half aimed at patients and the lay public, and one half aimed at experts and professionals. Sarah made a point of attending both halves of the day, and subsequently contacted Genomics England to argue that segregating the day in this way was unhelpful. Genomics England was receptive to this feedback, and made arrangements to collaborate with PET in future.
Also in October 2013, Sandy Starr spoke at a debate entitled 'Number Crunching and Ethics in the Era of Big Data' at the Battle of Ideas festival, which was organised by the Institute of Ideas. Sandy spoke alongside experts including Professor Tim Hubbard, Head of Bioinformatics at Genomics England.
In November 2013, a PET Trustee - Dr Jess Buxton - was quoted by Channel 4 News discussing the UK launch of a different initiative to sequence the complete genomes of large numbers of participants, the Personal Genome Project. Then, in January 2014, PET submitted a substantial response to a public consultation on this area of policy conducted by Nuffield Council on Bioethics (NCoB) and entitled 'The Collection, Linking, Use and Exploitation of Biological and Health Data: Ethical Issues'.
February 2014 saw Sarah Norcross attend the annual dinner and discussion of the All-Party Parliamentary Group on Medical Research, held at the Houses of Parliament, where the topic of discussion was 'Unlocking the Genome for Personalised Care'. Sarah was seated with Sir Peter Bottomley (MP and former Minister), Liam Byrne (Shadow Science Minister), and Stephen Dorrell (Chair of the Commons Health Select Committee).
Later in February, Professor Marcus Pembrey was a panel speaker at a public event in Bristol entitled 'Should Genes Be Public?', where the merits and demerits of both the 100K Genome Project and the Personal Genome Project were debated. The event was organised by the University of Bristol at the M Shed Museum.
Mitochondrial donation
Techniques are being 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 is needed, before such techniques can be used in treatment within the UK even in a controlled clinical trial.
PET has had a continued interest in the possibility of such techniques for many years, having first discussed them on BioNews in 1999 when they were still hypothetical.
In April 2013, a letter by Sarah Norcross about the science and policy aspects of mitochondrial donation was published in New Scientist magazine. Then in June 2013, Sarah attended a press briefing to hear the Chief Medical Officer - Professor Dame Sally Davies - announce the Government's stance on the issue.
Happily, the Government was supportive of changes to the law to permit mitochondrial donation. Sarah was subsequently interviewed by numerous news outlets about the Government's position, and she appeared on the TV channels BBC News and BBC World News as well as on BBC Radio Jersey.
Sarah was also quoted in the Guardian article 'Three-person IVF: UK government backs mitochondrial transfer', in the Channel 4 News article 'Breaking IVF barriers: Britain a world leader once again', and as far afield as Colombia in El Espectador's article 'Gobierno inglés a favor de hijos de tres padres genéticos'.
In February 2014, the Government published draft regulations on mitochondrial donation, and launched a corresponding public consultation to which PET intends to submit a response. In March 2014, Sarah discussed these regulations in a presentation to the conference 'The Society of Control: Interrogating Law, Governance and Regulation', organised by the University of Kent's Critical Law Society.
The HFEA and its future
The HFEA, which regulates fertility treatment and embryo research in the UK, had been spared proposed abolition during the previous financial year. However, the regulator began the new financial year subject to a Government-commissioned review of its efficiency, effectiveness, transparency and accountability. The review was led by Justin McCracken, Chief Executive of the Health Protection Agency.
Sarah Norcross was one of the experts to whom Mr McCracken spoke when gathering evidence for his review, and his report was presented to Government in April 2013. One possibility he had been asked to consider was whether the HFEA should be merged with another regulator, the Human Tissue Authority, but ultimately he recommended that they remain separate. In July 2013, the Government announced that it would accept his recommendations.
PET followed these developments closely, reporting on them in BioNews and considering what impact the Government's plans for the future of the HFEA might have upon fertility treatment and embryo research. Sarah Norcross and Sandy Starr attended HFEA Open Authority meetings throughout the year, with Sarah also attending meetings of the HFEA's National Donation Strategy Group, which addresses impediments to egg and sperm donation in the UK and of which Sarah is a member.
With its continued existence no longer in doubt, in February 2014 the HFEA organised a conference for clinicians and patient groups for the first time in several years, entitled 'Putting Patients at the Centre of What We Do'. PET arranged to have an exhibition stand at this conference, manned by Sarah and Sandy, who also participated in conference discussions and workshops throughout the day.
National Institute for Health and Care Excellence
PET continued to be involved in discussion of guidance and advice developed by the National Institute for Health and Care Excellence (NICE), specifically the 'Clinical Guideline Fertility: Assessment and Treatment for People with Fertility Problems' (an updated version of which had been published in February 2013) and the Quality Standard Fertility Problems (due to be published in October 2014).
April 2013 saw the journal Reproductive BioMedicine Online publish an article by Sarah Norcross entitled 'Cassandra's prophecy: education, education, education', about the NICE Clinical Guideline and its implementation. April 2013 also saw PET organise a public event on this subject entitled 'NICE Try... but Is Anyone Listening?' (discussed in detail below).
Meanwhile, PET registered as a stakeholder for the development of the Quality Standard, and in January 2014 submitted a response to a NICE engagement exercise for this Quality Standard. Then in March 2014, Sarah attended a meeting of NICE's Quality Standards Advisory Committee held in Manchester.
Other work on assisted conception and fertility
Throughout the year, Sarah Norcross continued to serve on the Committee of the National Infertility Awareness Campaign (NIAC), an umbrella body which has the support of a number of organisations working in the field of fertility - from professional bodies to patient support groups, and charities including PET. For more than 20 years, NIAC has campaigned for people to have comprehensive and equal access to a full range of appropriate NHS investigations and treatments for infertility.
In April 2013, NCoB published its report Donor Conception: Ethical Aspects of Information Sharing, to which PET had submitted a response. Sarah attended a press conference at the Wellcome Trust to announce the report's findings, while Antony Blackburn-Starza attended the launch of the report at the Barbican Centre. Sarah was interviewed about the report on BBC Radio Bristol, and the report was discussed in several news and comment pieces on BioNews which attracted a particularly high number of reader comments.
June 2013 also saw Sarah Norcross and PET Trustee John Parsons involved in a conference entitled 'Abortion, Motherhood and the Medical Profession', organised jointly by the British Pregnancy Advisory Service and the Royal Society of Medicine. Sarah chaired the conference's opening session 'Fetal Imaging and Imagining the Fetus', while John spoke at the conference's closing session.
In September 2013, Sarah and Sandy went to the Houses of Parliament to attend the launch of Brilliant Beginnings, an agency that guides and supports those who use surrogacy or egg donation. The evening was hosted and introduced by Jo Swinson (Minister for Women and Equality) and John Healey (MP), both of whom were involved in the campaign for women who have children through surrogacy to be given equal maternity pay, leave and rights. This campaign was reported on in BioNews, and was ultimately successful.
In March 2014, Sarah spoke at and chaired sessions at the 'UK Surrogacy Conference' organised in Windsor by Families Through Surrogacy. Her fellow speakers included several regular contributors to BioNews.
Autism
PET has a longstanding interest in the genetics of autism, and in broader aspects of autism and related policy and research.
In April 2013, Sandy Starr travelled to Beerse in Belgium, for a conference organised as part of the research project 'European Autism Interventions: A Multicentre Study for Developing New Medications'. Sandy is a member of that project's Ethics Advisory Board, in which capacity he gave a joint presentation to the conference alongside the Board's Chair.
In July 2013, Sandy attended an event hosted and introduced by Samantha Cameron at 10 Downing Street, where the country's leading autism research charity Autistica (on whose Editorial Board Sandy serves) launched its Breakthrough Appeal - an initiative to raise sufficient funds to enable breakthroughs in key areas of autism research.

Annual Conference
Double Take: Twins in Genetics and Fertility Treatment
PET's annual conference was held on 4 December 2013 at University College London's Institute of Child Health.
What was it about?
Why are twins so fascinating? From Jacob and Esau to Jedward, science and society have regarded twins as special - usually in a good way. Now, because of the increase in multiple births following assisted conception, twins are viewed by some as dangerous and problematic.
The PET discussion conference 'Double Take: Twins in Genetics and Fertility Treatment', which took place at London's Institute of Child Health on Wednesday 4 December 2013, explored twins and multiple births. It included discussion of the biology of twins, the usefulness of twin studies, the issue of multiple births resulting from fertility treatment, and the implications of the HFEA's single embryo transfer policy and 10% target for multiple births.
Appropriately (given its subject matter), the conference was a day of two halves - the morning was dedicated to 'Twins in Genetics', while the afternoon was dedicated to 'Twins in Fertility Treatment'. For the first time ever at a PET conference, people had the option of booking to attend the full conference or just the morning or afternoon half, depending on their interests.
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 was scheduled to take place around the time when it was expected that the High Court would give judgment in a case of judicial review, brought by two fertility clinics against the HFEA. The case centred on the imposition of a condition of a fertility clinic's treatment and storage licence not to exceed the multiple birth rate target (currently set at 10%), and was therefore directly relevant to the conference. PET secured the regulator's Head of Compliance (Nick Jones) and the Person Responsible for the two clinics involved in the case (Mohamed Taranissi) - as well as the latter's lawyer James Lawford Davies (and chair of the PET Advisory Committee) - as conference speakers.
The conference was equally timely in relation to controversy surrounding the policy ramifications of the use of twins in genetic research. One of the speakers - Robert Plomin, Professor of Behavioural Genetics at King's College London - arrived at the conference straight from the Houses of Parliament, where he had just been giving evidence based on twin studies to the Education Select Committee's Inquiry into Underperformance in Education of White Working Class Children.
Speakers
George Attilakos (Lead Clinician at University College Hospital's Maternal-Fetal Assessment Unit)
Dr Jordana Bell (Senior Lecturer at King's College London's Department of Twin Research and Genetic Epidemiology)
Professor Sir John Burn (Chair of the British Society for Genetic Medicine)
Rachel Cutting (Prinicipal Embryologist at Royal Hallamshire Hospital's Centre for Reproductive Medicine and Fertility)
Jane Fisher (Director of Antenatal Results and Choices)
Dr Nicky Hudson (Senior Research Fellow at De Montfort University's School of Applied Social Sciences)
Dr Jane Hurst (Lead Clinician in Clinical Genetics at Great Ormond Street Hospital)
Nick Jones (Director of Compliance at the Human Fertilisation and Embryology Authority)
Dr Yacoub Khalaf (Director of Guy's Hospital's Assisted Conception Unit)
James Lawford Davies (Partner at Lawford Davies Denoon)
Sarah Norcross (Director of PET)
Marcus Pembrey (Chair of Trustees at PET)
Robert Plomin (Professor of Behavioural Genetics at the Social, Genetic and Developmental Psychiatry Centre)
Mohammed Taranissi (Founder and Medical Director of the Assisted Reproduction and Gynaecology Centre)
Chairs
Professor Sir John Burn (Chair of the British Society for Genetic Medicine)
Jane Denton (Director of the Multiple Births Foundation)
Professor John Galloway (Trustee at PET)
John Parsons (Trustee at PET)
Audience
There were 150 attendees. These included academics, ethicists, fertility doctors, nurses, counsellors, journalists, lawyers, patients, practitioners, regulators and students. Other charities (including the British Infertility Counselling Association, the Donor Conception Network, Infertility Network UK, the Multiple Births Foundation and the Twins and Multiple Births Association) sent representatives to the conference. In terms of policymakers, representatives of the Department of Health, the Scottish Government's Child and Maternal Health Division, the HFEA and the British Medical Association also attended.
Evaluation
PET received 46 evaluation forms from conference attendees.
In summary
98% thought the programme was 'excellent' or 'good';
96% thought the overall experience was 'excellent' or 'good';
96% thought the opportunity to view their opinion was 'excellent' or 'good';
100% stated they were better informed;
26% had not attended a PET event before.
Freeform comments from attendees included
'Best meeting I've been to since the last PET Annual Conference, although I think this was the best yet. If you only go to one meeting a year it should be the PET conference - enlightening, challenging, inclusive... unique!'
'Really enjoyed the day - even as a non-expert the sessions were well pitched and organised, and stimulated very interesting debate.'
'As ever, a superb and interesting conference with plenty of time to debate.'
'Really well organised, thank you.'
'Excellent day with very lively and illuminating discussion.'
Media
PET exploited the fact that several of the speakers were enjoying a high media profile at the time of the conference.
During the week of the conference, PET's own Professor Marcus Pembrey was featured across the print, broadcast and online media and was interviewed on the Today programme on BBC Radio 4, regarding his latest research into transgenerational responses. Meanwhile, fellow panellist Professor Robert Plomin was receiving widespread media coverage for his research on twins, his briefings to government and his provocative new book G is for Genes: The Impact of Genetics on Education and Achievement.
The conference was attended by journalists from publications including the Independent newspaper, the British Medical Journal (BMJ) and New Scientist magazine. The Independent reported on the first half of the conference, 'Twins in Genetics', in its December 2013 article 'Similar but not identical: study reveals more about twins than about education'. The BMJ reported on the second half of the conference, 'Twins in Fertility Treatment', in its January 2014 article 'Twin dilemma'. Each of these articles quoted several conference speakers.
Professor Plomin's twin research continued to receive ongoing coverage in the week following the conference, and Sarah Norcross was quoted – in New Scientist magazine, and in the Daily Mail and Daily Telegraph newspapers – urging scepticism about some of the conclusions being drawn from his research. BioNews covered the controversies around Professor Plomin's research in detail, reporting on every relevant development in science and policy before and after the conference, and reviewing both Professor Plomin's book G is for Genes and his appearance before the Education Select Committee on the morning of the conference.
Impact
Multiple births policy was a major topic of discussion at the HFEA's February 2014 conference 'Putting Patients at the Centre of What We Do'. Several participants at this conference referred to arguments that were made and information that was disclosed at PET's 'Double Take' conference when discussing the issue, illustrating that the conference had a significant impact in the fertility sector.
Support
The conference benefited from financial support including an unrestricted educational grant from Merck Serono, and additional support from the London Women's Clinic, Auxogyn and Ferring Pharmaceuticals. The Trustees are very grateful for all the support received.

'When It Takes More Than Two' project
In 2013, PET concluded its 'When It Takes More Than Two' project, which was supported by the Wellcome Trust. The project aimed to clarify public and professional understanding of issues related to donor conception, particularly questions of identity, parenthood, genetics, donor information and screening.
Under the auspices of this project PET organised three public events, sourced six case studies, created a heredity factsheet and glossary of specialist terms, and published and disseminated a variety of related text and audio materials. The bulk of this work was carried out in the previous financial year, 2012-13, but the project's final podcast – an interview with Dr Allan Pacey, Chair of the British Fertility Society – was produced by James Brooks in April 2013.
The final stage in the project was an online poll, which was conducted by PET throughout March and April 2013. In order to gauge public opinion on issues that the project raised, PET invited attendees at each of the preceding events to suggest questions for the poll, and their feedback informed both the poll's scope and how the poll questions were framed.
This was a particularly exciting part of the project, as PET was curious as to what audience members wished to know. Several of these questions would not have been chosen by the project team – for instance, 'Should people who are considering having children via donor conception be encouraged to adopt instead?', a question which is liable to exasperate those who receive or provide fertility treatment – but since so many people suggested this question, its inclusion in the poll was deemed appropriate.
The poll elicited 802 responses, and the results were discussed in two BioNews articles by Sandy Starr. Meanwhile, Sarah Norcross – in her capacity as a member of the National Donation Strategy Group established by the HFEA – fed the outputs and outcomes of the project directly to policymakers whose remit encompasses donor conception.
Sarah went on to discuss the project in her closing plenary address to the 12th Annual Conference of the British Sociological Association's Human Reproduction Study Group. She also wrote a piece about the project that was published in the Journal of Fertility Counselling.
Drawing upon the many difficulties encountered in organising the project's launch event in the previous financial year, and the way these difficulties were successfully resolved, Sarah devised and spoke at a session entitled 'Keep Calm and Carry On: Practical Tips on How to Cope when Public Events Go Wrong' at the British Science Association's Science Communication Conference in May 2013.

Other public events
NICE Try... but Is Anyone Listening?
This event (which took place on 16 April 2013) discussed the provision of NHS-funded fertility treatment. The event was funded by the British Fertility Society (BFS), and was held as an adjunct to a conference organised by the BFS and the Royal College of Obstetricians and Gynaecologists. Unlike that broader conference, the event was free and open to the general public, and therefore attracted an audience that mixed professional conference delegates with a wider variety of patients and laypeople.
What was it about?
In 2013, the NICE published its updated Clinical Guideline, Fertility: Assessment and Treatment for People with Fertility Problems. NICE guidelines set standards for the NHS, Local Authorities and other healthcare providers, but adherence to these standards is not mandatory.
The provision of fertility services on the NHS has fallen short of the standards set by NICE's original 2004 fertility guideline. The updated guideline expands the range of people who may be eligible for NHS-funded treatment, giving hope to those who may previously have been denied treatment on grounds including age or having a same-sex partner. These hopes may be dashed, however, if the current provision of fertility treatment does not improve.
One of the most infamous problems with provision as it stands is the 'postcode lottery', whereby the availability of treatment and the criteria used to decide which patients are eligible vary widely across the country. The situation may be further complicated now that local GP-led Clinical Commissioning Groups have taken over from Primary Care Trusts, meaning that decisions about whether and to whom NHS-funded treatment is provided have been placed in the hands of GPs.
This event saw a panel of experts discuss the key changes that have been made to the NICE guideline and the current levels of access to treatment in England, as well as considering what the future holds for the provision of fertility treatment on the NHS.
Speakers
Dr Yacoub Khalaf (Director of Guy's Hospital's Assisted Conception Unit)
Dr James Kingsland (President of the National Association of Primary Care)
Peter Taylor (Adviser to PET)
Chair
Allan Pacey (Professor of Andrology at the University of Sheffield)
Audience
140 people attended. The audience included representatives of the Department of Health and the HFEA, as well as members of the House of Lords.
Evaluation
PET received 65 evaluation forms from event attendees.
In summary
98% thought the overall experience was 'excellent' or 'good';
98% thought the opportunity to view their opinion was 'excellent' or 'good';
87% stated they were better informed;
29% 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
'Excellently opinionated speakers. Brilliant chair.'
'Passionate clinician, straight speaking commissioner, education and upskilling advocate.'
'Targeted and appropriate.'
'Very experienced, highly knowledgeable, best exposed hence ideal representation.'
Media
The event was discussed on Fertility Matters, a website run by author and patient advocate Kate Brian.
Impact
Ideas discussed at the event were fed directly into the proceedings of the National Infertility Awareness Campaign (of which Sarah Norcross is a member). The event also formed part of PET's ongoing involvement in discussion of guidance and advice developed by NICE, as detailed under 'Parliamentary and Policy work' above.
Outputs and outcomes
The event was recorded in its entirety, and a podcast of the proceedings was made freely available online via the PET website.
Hype, Hope and Headlines: How Should Breakthroughs in Fertility Treatment Be Reported?
This event (which took place on 25 September 2013) was organised in partnership with City University London's Science Journalism course.
What was it about?
New techniques and technologies in fertility treatment often grab the headlines. The inspiration for this event was a letter written to The Times newspaper by the eminent fertility consultant Professor Nick Macklon and others, complaining about the newspaper's coverage of so-called breakthroughs in fertility treatment. This event saw the science editor from The Times who wrote the articles – Dr Hannah Devlin – speak on a panel alongside Professor Macklon and also the prominent fertility professional Professor Simon Fishel, who was responsible for one of the supposed breakthroughs reported.
These three speakers, chaired by PET Trustee Fiona Fox, explored how and when fertility research should be reported in the media and where the responsibility lies to ensure that such reporting is not overhyped.
Speakers
Dr Hannah Devlin (science journalist)
Professor Simon Fishel (Managing Director of CARE Fertility)
Nick Macklon (Professor of Obstetrics and Gynaecology at the University of Southampton)
Chair
Fiona Fox (Adviser to PET, and Founding Director of the Science Media Centre)
Audience
120 people attended.
Evaluation
PET received 39 evaluation forms from event attendees.
In summary
94% thought the overall experience was 'excellent' or 'good';
82% thought the opportunity to view their opinion was 'excellent' or 'good';
79% stated they were better informed;
40% stated that they found media coverage of breakthroughs in fertility treatment to be over-optimistic;
46% stated that they found media coverage of breakthroughs in fertility treatment to be confusing;
53% had not attended a PET event before.
Freeform comments from attendees included
'Good selection of viewpoints, very thought provoking, thank you so much for making this so accessible for me.'
'Well prepared, easily accessible, relevant information.'
'Three different professionals, three arguments, lots of food for thought.'
Media
The event was preceded by an item on the BBC Radio 4 programme Woman's Hour, in which City University's Connie St Louis and Professors Simon Fishel and Nick Macklon had a lively debate about the roles and responsibilities of clinicians, scientists, journalists and patients when it comes to advances in the science and medicine of fertility.
The event was reported on by the BMJ, in a piece by the journal's deputy editor Richard Hurley entitled 'Are new technologies in infertility treatment always good news?'. The article quoted every member of the panel from the debate, including the chair (PET's Fiona Fox).
The event was also reviewed and discussed by diverse websites and publications including Fertility Matters, Femmevision and Felix (the student newspaper of Imperial College London). Meanwhile, a synopsis of the event's proceedings that was published in BioNews was subsequently republished in the Journal of Fertility Counselling.
Impact
One of the journalists who attended the event was BBC health editor James Gallagher. In the days following the event, he wrote a story for BBC News – 'Early menopause: Baby born after ovaries reawakened' – in which Professor Macklon was cited, urging caution before raising patients' hopes about a proposed new method of restoring fertility.
Furthermore, James Gallagher could himself be heard advising a similar note of caution that week, when reporting the same story about reawakening ovaries on Radio 4's Today programme and discussing the story with presenter John Humphrys. PET was delighted to see its event have such an immediate and tangible impact.
Outputs and outcomes
In October 2013, Sandy discussed the themes of the 'Hype, Hope and Headlines' event as a panel speaker at 'Science and Society: Brave New World or Geek Chic?' a debate organised by the Institute of Ideas in London. One of the main topics of discussion was trends within science and health journalism.
In March 2014, Sandy and Dr Hannah Devlin explored the themes of the 'Hype, Hope and Headlines' event in even greater depth at a roundtable discussion entitled 'Who'd Be a Science Journalist?', again organised by the Institute of Ideas in London.

Other activities
Work with schools and universities
For several years now, PET has contributed to an annual public engagement day for schools and the broader public organised by the British Society for Gene and Cell Therapy, entitled 'Gene Therapy and Stem Cells: 21st Century Medicine'. This event gives sixth-formers and the general public a rare opportunity to meet pioneering clinicians and researchers in the fields of genetics and stem cells.
The event was held at Royal Holloway University of London in April 2013, and at the University of Oxford's Museum of Natural History in March 2014. PET exhibited on both occasions, with hundreds of sixth-formers visiting an exhibition stand manned by Sarah Norcross and Sandy Starr. These pupils 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.
Sarah was also a panel speaker on both occasions, joining a panel of experts at each day's conclusion to offer PET's perspective on ethical and policy questions surrounding genetics and embryo/stem cell research. The number of bright and curious schoolchildren whom PET spoke to at these events helped reassure the charity that the future of genetic research is in good hands.
PET also contributed to a number of educational events for university students throughout the year. In January 2014, Sarah gave a lecture to Reproductive and Developmental Medicine students at the University of Sheffield, discussing the complexities of surrogacy law and regulation.
Progress Educational Trust website
Between 1 April 2013 and 31 March 2014, there were 43,692 visits to the PET website, representing an average of more than 120 visitors a day. 85% of these visitors are new, which means that PET is continuing to broaden its audience.
The BioNews page on the PET website continues to be the most popular page, with 25,973 pageviews, followed by the homepage. Search engines accounted for 42% of all traffic, although it should be noted that the sources(s) for another 42% of traffic is unknown.
New content and features continued to be added to the Progress Educational Trust website throughout the year.
This week at the Progress Educational Trust
This feature continued to be posted 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 Grant throughout this year, enabling PET to place Google Adwords (up to a daily value of US$329) on Google's Result Page completely free of charge. Between April 2013 and March 2014, Google Adwords sent 29,277 visitors to the PET website.
Google Adwords is still the highest source of traffic to the PET website, and the majority of these visitors are new. A new volunteer was recruited at the end of the financial year to review the PET Adwords account.
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 47% increase in the number of followers of @BioNewsUK on Twitter (which stands at 1,984) and a 43% increase in the number of 'likes 'of the Progress Educational Trust's Facebook page (which stands at 693).
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 2013.
As a result, several pieces of research presented at the conference were covered by BBC News, Medical Daily, Drug Discovery Today and Nature Medicine, while PET itself published several news stories covering the conference in BioNews.
PET also manned an exhibition stand throughout the conference, promoting BioNews and the charity's other activities and initiatives, and will continue to work with the BSGM in future.
The Fertility Show
PET exhibited at the Fertility Show in November 2013. 3,602 people attended this event, most of whom were members of the public who were having difficulty in 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.
For the first time at this event, in addition to PET manning an exhibition stand Sarah Norcross also gave a presentation entitled 'The Science behind IVF Headlines: Sorting the Known Knowns from the Known Unknowns'. This offered advice to current and prospective patients trying to work out who and what to believe, when reading news stories about fertility.
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 (many of whom hailed from overseas) 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 stalwart volunteers and advisers as well as one of the charity's Trustees (John Parsons).
European Society of Human Reproduction and Embryology
The annual meeting of the European Society of Human Reproduction and Embryology (ESHRE) took place in London in July 2013. This event takes place in a different country every year and is always a major date in PET's calendar, because it sees so many of the world's leading researchers and clinicians come together to present their work and discuss cutting-edge developments.
The cost of travelling overseas to attend ESHRE's annual meeting is usually prohibitive for PET. The fact that the 2013 meeting took place in London therefore presented a rare and valuable opportunity. Sarah Norcross attended the meeting together with PET Genetics Editor Siobhan Chan, who reported directly on the proceedings for BioNews.
British Fertility Society conference
PET exhibited at 'Effective Nutrition from Conception to Adulthood', the Annual Conference of the British Fertility Society, in Sheffield in in January 2014. Sarah Norcross attended the conference, encouraging attendees to subscribe to BioNews and recruiting new comment authors.
Other events
PET staff attended and contributed to many other conferences and events in 2013-2014. 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.

Operational Achievements
Personnel
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 (Science Editor) and Antony Blackburn Starza (Legal Editor) continued to work at PET.
Dr Lux Fatimathas resigned as PET/BioNews Genetics Editor in March 2013, and Siobhan Chan was appointed in her place in April 2013.
In summer 2013, PET employed Nils Downes and Annabelle Raza in the role of Director's Assistant as part of the Santander Internship Programme 2013, which was run with Queen Mary University of London.
Training
PET makes a point of seeking opportunities for its staff to undergo training and participate in relevant courses, in order to develop their skills and improve their performance.
During this financial year, Sarah Norcross and Sandy Starr attended events organised by the FSI which included a conference in October 2013, and several days of training on social media, pensions, gift aid, legacy fundraising, corporate donations and major donors in January 2014. The FSI is a charity whose beneficiaries are other charities, specifically small charities like PET which need to achieve ambitious goals with few resources.
Sarah and Sandy also attended Grantholder Days organised by the Wellcome Trust in May and September 2013. The Wellcome Trust is the largest charity in the UK, and is a major and longstanding supporter of various PET activities and initiatives.
Grantholder Days are attended by many different organisations that receive Wellcome funding for public engagement work. These events therefore provide PET with useful opportunities to learn from other people's experiences while also sharing lessons from PET's work. The September 2013 Grantholder Day was organised in an Open Space Technology format, providing Sandy with the opportunity to run a session.
Volunteers
PET has benefitted from a steady stream of highly motivated and professional volunteers. During 2013 and 2014, 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.

Financial review
The net incoming resources for the period amounted to £17,175 (2013: £30,375).
Incoming resources amounted to £141,259 (2013: £150,989) which is a decrease of 6% compared to the last financial year. This total is mainly represented by income from charitable activities in the sum of £86,490 (2013: £102,622) as detailed in note 4. The majority of the balance of incoming resources consists of donations in the sum of £54,708 (2013: £48,347).
Expenditure amounted to £124,084 (2013: £120,614) which is an increase of 3% compared to the last financial year. The main constituent of the total relates to salaries. At a cost of £97,958 salaries represented 79% of total expenditure (2013: 79%).
Due to the receipt of grant funding from the Wellcome Trust and the donations from Friends of PET, the charity's financial situation was satisfactory throughout the year. Net current assets at year end amounted to £69,469. Future financial viability will depend upon the continued support of grant funding bodies, customers for PET's writing and training work, sponsors, 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
'Breast Cancer: Chances, Choices and Genetics' Project
This project is supported by a People Award from the Wellcome Trust. It will use the high level of public interest in the risk-reducing mastectomy undergone by actress Angelina Jolie in 2013, and in a landmark 2013 US Supreme Court ruling about the patenting of breast cancer predisposition genes, 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.
PET has already started laying the ground for this project, by publishing news and comment pieces on BioNews about the developments mentioned above. Additionally, Professor Marcus Pembrey contributed to a June 2013 article entitled 'Supreme Court BRCA patenting decision: experts respond', in the online news and comment publication The Conversation.
Donor Conception Event
PET will organise an event on donor conception in collaboration with the University of Manchester's Morgan Centre for Research into Everyday Lives, to disseminate the findings of this organisation's 'Relative Strangers' project.
Genomics England Project
PET will build upon its 2013-2014 work on genomic data and health data by carrying out a range of public engagement activities for Genomics England in autumn 2014.
21st Anniversary
PET will mark its 21st anniversary in October 2014 and celebrate this landmark, using it to enhance the prominence of the charity and to raise additional funds.
Annual Conference
The overarching theme of PET's Annual Conference will be 'The Commercialisation of Life', and the conference will examine this topic in terms of both genetics and assisted conception.
Funding
PET will apply for several grants in 2014-2015, 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 2014 and signed on their behalf by Fiona Fox (Trustee).