Page URL: https://www.progress.org.uk/trusteesreport2009
This document is part of the Progress Educational Trust (PET)'s reports and accounts for the year ended 31 March 2009, as submitted to the Charity Commission.
The charity's 2014, 2013, 2012, 2011, 2010, 2008 and 2007 reports and accounts are also available on this website.

Trustees' Report for the year ended 31 March 2009

The Trustees present their report for the year ended 31 March 2009.

Charity information
Trustees: Professor Marcus Pembrey (Chair)
Tony Hickinbotham (from April 2008)
Laura Riley (until November 2008 )
John Parsons
Advisory Committee: Malcolm Hodgson (Chair)
Pat Bristow
Fiona Fox
Dr Evan Harris
Harry Hart
Dr Tessa Homfray
Ben Jones
James Lawford-Davies
Dr Fred Kavalier
Alastair Kent
Stuart Lavery
Fiona Miller
Dr Stephen Minger
Laura Riley (from March 2009)
Dr Elisabeth Rosser
Dr Anna Smajdor
Dr Alan Thornhill
Charity number: 1011897
Charity offices: 140 Gray's Inn Road, London, WC1X 8AX
Auditors: John Green and Co, Certified Accountants and Registered Auditors, Suite 2.16, Astra House, Arklow Road, London SE14 6EB, UK
Bankers: Royal Bank of Scotland, 28 Cavendish Square, London W1M 0DB, UK

Trustees
Those named under 'Charity information' served as indicated for the year ended 31 March 2009. Professor Marcus Pembrey continued as Chair. Tony Hickinbotham was invited to become a Trustee in March 2008, this position was formally ratified at the meeting on 14 April 2008. Laura Riley resigned as a Trustee on 17 November 2008. This was formally ratified at the Trustees' Meeting on 25 November 2008.
Laura Riley was invited to continue to attend Trustees' Meetings as an observer.
All Trustees give of their time freely and no remuneration or expenses were paid to them in the year.

Appointment of new Trustees
Trustees are usually appointed after joining and serving some time on PET's Advisory Committee or as a former member of Staff or through a personal connection. This helps determine whether they have the right level of skills and commitment to act as Trustees.

Advisory Committee
The Advisory Committee has been reconstituted. Between them the members now have a depth of skills and experience in genetics, embryology, assisted reproduction, stem cell research, clinical practice, media, education, information technology, business, commercial practices, law, medical ethics and charity management.
The Committee met five times 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 Advisors are consulted by the Director on an ad hoc basis.

Trust Deed and objects of the charity
The charity is governed by a Trust Deed dated 17 May 1992. The Trust was registered as a charity on 15 June 1992.
The Deed records that the object of the charity is to advance the education of the public in all matters involving human fertility and the human embryo and in particular to undertake research increasing knowledge concerning the causes and prevention of congenital disease; and increasing knowledge about the causes of miscarriage.
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.The Trustees consider how planned activities will contribute to the objects of the charity.
The Trustees review the aims, objectives and activities of PET each year. There is a rolling evaluation of its activities at both Trustees' and Advisory Committee meetings.
Main objectives and strategies and public benefits
The fundamental objective of PET is to help create an environment in which ethically sound research and practices in genetic services and assisted conception 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 congenital or genetically-determined 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 those with a professional one.
PET's strategy to achieve these objectives in 2008-2009 has been to provide and encourage authoritative and balanced information, comment and debate on topical and contentious issues arising in its field. PET has operated in the civic space between government/regulators, scientists and practitioners, and those who are directly or potentially affected by developments in these fields of biomedicine. PET has sought to bring timely influence to bear on policymakers as new advances and issues have arisen.
The principal way in which PET seeks to achieve this objective is to provide information, comment and debate on assisted conception, genetics and stem cells, which is both reliable and balanced. PET has continued to do this through its weekly email newsletter, 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 10,000.
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 technologies in this field often bring with them. 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 the events are widely advertised so as to attract a large and diverse audience. More than 100 people attended each event which was held during this period. Reports of the events and comment pieces by some of the speakers are published in BioNews so those who cannot attend can read about them online thus widening their reach.
The benefits of PET's activities were carefully balanced against any harm or detriment. Two of PET's activities involved issues concerning minority groups (the deaf community and Pakistani Muslims) and care was used in tackling these issues so as to ensure that they were conducted with sensitivity. Likewise PET's annual conference, which involved a large number of different religions required careful planning to ensure that the event discussed the different view points of the different faiths without being judgemental and promoting one set of views over another.
Collaborations with reputable and established organisations are being maintained and expanded to enable PET to reach out to a larger audience. Communication is central to PET's work and PET will continue to engage with its audience via the spoken word, print and internet publications and websites. The redevelopment work of PET's website and the BioNews email are key to PET's continued excellence in communication.

Development activities and achievements
BioNews
BioNews, the charity's free online news service and comment resource attracted a growing number of subscribers.
The number of Volunteer Writers at BioNews has continued to grow. There are now 13 regular writers and several more people in the pool.
In February 2008 PET was awarded a Section 64 grant by the Department of Health to develop BioNews. This grant, which is paid quarterly, was first received in May 2008. In September 2008 PET was awarded a Society Award grant from the Wellcome Trust to develop BioNews and PET websites. The first payment under this grant was made in December 2008.
PET started to use these grants to develop the BioNews contacts database, the website and the format of the BioNews weekly email and has engaged Face to Face to upgrade and integrate PET's websites and the BioNews email and Thunder to design the new visuals.
BioNews survey
In 2008 PET conducted a survey of BioNews readers. More than 250 responses were received from readers in 31 different countries. PET learnt about reading habits, the majority of respondents reading most articles every week. PET also learnt that each issue of BioNews is seen by approximately double the number of BioNews subscribers due to readers forwarding it on to others. Those who responded came from a wide variety of backgrounds
BioNews business mentor
PET identified a volunteer business mentor for BioNews, Dr Helene Guldberg (Managing Editor of spiked) and PET has held telephone conferences with her to discuss ways in which PET can move towards making BioNews self-sustaining.
Jobs and opportunities advertised in BioNews
In September 2008 BioNews started to carry jobs and opportunities advertisements in order to generate additional revenue while providing an additional useful feature for readers. This initiative has enjoyed early success and will continue.
BioNews Internships
The BioNews editors continued to select and train two University College London) PhD science students per term in the art of science reporting. The feedback received from the students has been very positive. PET hopes to create additional places on the scheme to offer training to PhD students at King's College London.
BioNews #500
BioNews published its landmark 500th edition on 23 March 2009. Mark Henderson, Science Editor for The Times, wrote a special commentary.
A celebratory party was held on 25 March 2009 to mark the occasion. The 500th edition coincided with BioNews' 10th birthday. The event attracted some sponsorship and a fundraising raffle was held. The primary purpose of the party was to act as a thank you to the BioNews Staff, the BioNews volunteers and of course its readers.
500 Fivers
PET launched a fundraising appeal at the beginning of 2009 entitled '500 Fivers' to tie in with the 500th edition of BioNews. This appeal is ongoing.
Annual Conference
Is the Embryo Sacrosanct? Multi-Faith Perspectives
PET's annual conference was held on 19 November 2008 at Clifford Chance.
What was it about? During PET's work on the Human Fertilisation and Embryology Bill it became increasingly evident that representatives of different faiths frequently intervene in debates around fertility and assisted conception and dominate the headlines.
The purpose of this conference was to focus on the impact of new fertility legislation on individuals of different faiths, and examine and contrast the attitudes of different faiths towards assisted reproduction. The starting point for discussion was the question of whether the embryo is sacrosanct - that is, whether and in what circumstances the embryo is considered sacred, inviolable or in any way protected by religious sanction. Implications for practice were examined in relation to two specific areas - preimplantation genetic diagnosis and sperm and egg donation.
This conference attracted an audience of many different faiths and none and great care was taken in selecting the speakers to ensure that the event did not provoke religious, racial or ethnic hatred. Special dietary requirements were accommodated and a prayer room was provided.
Speakers: Anil Bhanot
Dayan Ivan Binstock
Sheila Briggs
Professor John Harris
Professor Peter Harvey
Professor David Jones
Dr Jagbir Jhutti-Johal
Yacoub Khalaf
Stuart Lavery
Rt Revd Dr Lee Rayfield
Mufti Muhammed Zubair Butt
Chairs: Baroness Haleh Afshar
Rabbi Dr Jonathan Romain
Dr Alan Thornhill
Audience: Included policymakers, journalists, biomedicine researchers and practitioners, academics and IVF practitioners. In addition a class of 18 sixth form religious studies students attended. People of many different faiths and ethnic backgrounds were among the 140 delegates. A pricing scheme was in place to allow those who were students, pensioners and those on benefits to attend at a reduced rate and a special price was given to the block booking of sixth formers.
The conference benefited from financial support from the Medical Research Council, Organon (a pharmacuetical company) as well as several publishers. The law firm Clifford Chance donated the venue and catering.
Jeans for Genes
The charity again produced the content for Jeans for Genes' schools' packs, which form an integral part of that organisation's annual fundraising appeal to help children with genetic conditions. Feedback on the previous year's packs was very positive and our expertise was used to further develop the packs. We expect our relationship with Jeans for Genes to continue.
Parliamentary work
PET was one of a group of charities, organisations and individuals who attended Parliamentary meetings on the Human Fertilisation and Embryology Bill. PET chaired and coordinated a policy group (including the Medical Research Council, the Wellcome Trust, the Royal College of Nursing, the British Medical Association and leading researchers and practitioners such as Dr Stephen Minger, Dr Robin Lovell-Badge and Professor Peter Braude), The purpose of these meetings was to allow those who work in the field or represent patients affected by changes in the legislation to exchange ideas, pool their knowledge and resources and to provide information to politicians of all parties and shades of opinion as to the impact the changes in legislation may have. PET also assisted others in preparing and circulating briefings.
PET continued this work once the Bill was enacted by starting up, coordinating and chairing an implementation group. The aim of this group was to share ideas and identify areas for collaboration in response to consultations on the implementation of the Act by the Human Fertilisation and Embryology Authority and the Department of Health.
Debate on the Human Fertilisation and Embryology Bill
Half-Truths? The Science, Politics and Morality of Hybrid Embryos
This debate took place on 19 May 2008 at the Palace of Westminster.
What was it about? The creation of 'human admixed' or 'hybrid' embryos - embryos containing both human and animal material - was arguably the most controversial aspect of the Human Fertilisation and Embryology Bill, and was an issue on which Prime Minister Gordon Brown bowed to pressure for a free vote by MPs, following a concerted mobilisation by the Catholic Church.
The Human Fertilisation and Embryology Authority has already granted licenses for the use of such embryos in disease research, and there has been preliminary news of embryos created from human skin cells and cow eggs at Newcastle University. But campaigners mounted a legal challenge to this work, while supporters and detractors of this field of research have accused one another of wilfully misleading the public.
What sorts of embryos can be created under the terms of the Human Fertilisation and Embryology Bill, and what can be done with them? What is the purpose of such research, and what might its benefits be? Do human admixed embryos have implications for the sanctity of life, and for what it means to be human? This public event at the Houses of Parliament saw the science, politics and morality of the issue debated from contrasting perspectives.
Speakers: Brenda Almond (Emeritus Professor of Moral and Social Philosophy at the University of Hull)
John Burn (Professor of Clinical Genetics and Head of the Institute of Human Genetics at Newcastle University)
Josephine Quintavalle (Director and Cofounder of Comment on Reproductive Ethics)
Chair: Fiona Fox (Founding Director of the Science Media Centre)
As the event was held in the Palace of Westminster, PET obtained cross-party sponsorship from the following Members of Parliament: Robert Key (Conservative), Dr Brian Iddon (Labour) and John Pugh (Liberal Democrat).
Financial sponsorship was obtained from publishers and a firm of solicitors. This free event was oversubscribed and attracted an audience which was varied in its range of age and opinion.
Guide to Genetics
The charity continued to promote its Guide to Genetics as an educational resource, with limited success.
Booklets
PET was contracted by Galton Institute to write a series of booklets at the end of 2007. Work on the first of these booklets, entitled A Guide to Preimplantation Genetic Diagnosis was completed in 2008 and the booklet, written by PET Science Information Officer Ailsa Stevens, has been published. PET has begun work on a second booklet entitled A Guide to Stem Cells. This contract is ongoing.
Ova patient magazine
PET has written three articles for Ova magazine, a patient magazine produced by the London Women's Clinic. PET anticipates that this writing work will continue.
Reproductive BioMedicine Online
Three news items were adapted from BioNews for this journal. It is uncertain at the present time whether this work will continue.
British Society for Human Genetics press work
The charity's expertise was employed by the British Society for Human Genetics (BSHG) to assist with its press office activities. PET again ran BSHG's press office at its annual conference held in York in September 2008. As a result of PET's work, research presented at the meeting was reported in the local and national media and 2008 saw an unprecedented amount of coverage for the conference. This work is expected to continue.
PET newsletter
The Friends of PET newsletter Progress Report continued to be published quarterly and distributed to Friends. Progress Report is a means of keeping the Friends up to date with the charity's affairs.
European Society for Human Reproduction and Embryology (ESHRE) conference
Two members of PET's Staff attended the European Society for Human Reproduction and Embryology (ESHRE) Annual Meeting in 2008. They attended meetings and made use of press releases to enable them to produce in-depth, accurate reporting in BioNews of the studies presented at ESHRE, focussing on those of most interest to the BioNews readership.
PET Staff attendance at other conferences
PET Staff attended many other conferences and events in 2008-2009. This was valuable for the following reasons:
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;
horizon scanning and keeping abreast of developments.
Some of the relevant events are listed below.
In April 2008, Ailsa Stevens attended and manned an exhibition stand 'Journeys in the Genetic Jungle: Gene Therapies and Stem Cell Therapies for the 21st Century', an event for schoolchildren organised at Heriot-Watt University as an adjunct to the 7th Annual Conference of the British Society for Gene Therapy.
In September 2008, PET's Founding Chair of Trustees Professor Marcus Pembrey spoke at an event entitled 'Principles and Practice in Reproductive Medicine' organised by the British Fertility Society.
In January 2009, PET Director Sarah Norcross attended a conference entitled 'Fertility 2009', the 6th biannual conference the Association of Clinical Embryologists, the British Fertility Society and the Society for Reproduction and Fertility.
In March 2009, Sarah Norcross spoke about PET's policy work at an event entitled 'Human Fertilisation and Embryology Act: A Retrospective', organised by the Economic and Social Research Council's Genomics Network.
Debates
Two debates for which PET had received a public engagement award from the Wellcome Trust were held during this financial year and a third debate was held which was unfunded. All of these events were oversubscribed and free to attend.
Debating Deafness and Embryo Selection: Are We Undermining Reproductive Confidence in the Deaf Community?
This debate took place on 9 April 2008, at Techniquest in Cardiff.
What was it about? Clause 14 of the Human Fertilisation and Embryology Bill stated that in assisted reproduction, embryos known to be at risk of developing 'serious physical or mental disability' or 'serious illness' must not be preferred to embryos where there is no such risk. In the official Explanatory Notes to the Bill, and also during proceedings in the House of Lords, it had been specified that Clause 14 would prevent selecting embryos for deafness. This prompted fierce debate, with critics of Clause 14 arguing that it impeded reproductive liberty and undermined reproductive confidence, while supporters of Clause 14 argued that the deliberate creation of deaf babies was immoral. Others pointed to unintended consequences of Clause 14 for assisted reproduction, beyond prohibiting so-called 'designer deafness'.
Speakers: Dr Anna Middleton (Consultant Research Genetic Counsellor at Cardiff University)
Dr Steve Emery (Research Associate at Heriot-Watt University)
Colin Gavaghan (Lecturer in Medical Law and Ethics at the University of Glasgow)
Chair: Graham Turner (Professor of Interpreting and Translation Studies at Heriot-Watt University
PET worked in collaboration with Wales Gene Park on this event and received support from publishers and the Royal National Institute for Deaf People.
This is the first event which PET had organised where a large proportion of the audience was deaf and so British Sign Language interpreters and a palantypist were employed to facilitate communication and ensure that the discussion flowed.
Cousin Marriage: A Cause for Concern?
This debate was held in London on 29 May 2008 at Clifford Chance in London
What was it about? More than a billion people worldwide live in regions where 20-50% of marriages are consanguineous, and first-cousin unions are especially popular.
Discussion of this phenomenon is confused by the fact that its causes are social and economic, while its outcomes tend to be measured in terms of child health. International variations in infant mortality, and varying genetic factors within given communities, make it difficult to attribute health problems to cousin marriages with any degree of accuracy. But this did not prevent Government minister Phil Woolas from arguing that cousin marriages among immigrants are contributing to a surge of birth defects in the UK.
The questions this debate asked were: Is cousin marriage a legitimate cause for concern? If not, then why does it attract so much attention? If so, then what should be done about it?
Speakers: Alan Bittles (Professor of Human Biology at Edith Cowan University)
Dr Aamra Darr (Senior Research Fellow at the University of Bradford)
Dr Mohamed Walji (a GP practising in inner-city Birmingham)
Chair: Professor Marcus Pembrey (Founding Chair of Trustees at PET and Emeritus Professor of Paediatric Genetics at University College London's Institute of Child Health)
Cell-Free Fetal DNA: Testing the Waters
This debate was held in London on 23 September at the Royal Society of Medicine.
What was it about? A decade ago, it was found that the blood of pregnant women contains DNA from the fetus. The discovery of this 'cell-free fetal DNA' has led to the development of non-invasive prenatal diagnosis (NIPD), where genetic characteristics of the fetus can be analysed a mere few weeks into pregnancy by studying a sample of the mother's blood. This is safer and more convenient than invasive procedures such as amniocentesis, which carry a risk of miscarriage. And yet unlike other non-invasive prenatal tests such as ultrasound and serum screening, NIPD can offer definitive diagnoses. NIPD has been successfully refined to the point where it is now reliably used to determine the sex and blood type of the fetus, making it easier to anticipate sex-linked genetic disorders. It is predicted that within the next few years, NIPD will be offered for the diagnosis of Down's syndrome, cystic fibrosis and beta-thalassemia.
NIPD offers tremendous benefit to patients and medical practitioners alike, and holds considerable future promise, but concerns over the technique have also been raised. Has it been properly evaluated? Might it encourage Early pregnancy gender test sparks controversy? How can we regulate its direct availability, via mail order and the internet, from unreliable or unscrupulous providers? And what of the broader ethics of selective termination? This public debate sought to explain the science, explore the ethics and consider the future of free fetal DNA testing.
Speakers: Lyn Chitty (Senior Lecturer in Genetics and Fetal Medicine at University College London's Institute of Child Health
Jane Fisher (Director of Antenatal Results and Choices)
Ainsley Newson (Senior Lecturer in Biomedical Ethics at the University of Bristol
Chair: Dr Tessa Homfray (Consultant in Medical Genetics at St George's University of London)
This event was held in partnership with the Royal Society of Medicine.
Media and press coverage
Several of PET's public debates, most notably on deafness and cousin marriage, received national and regional print, broadcast and online coverage. By far the most extensive press coverage was in relation to 'Debating Deafness and Embryo Selection', with PET initiating a discussion that came to dominate the news agenda for several weeks. Chair of Trustees Professor Marcus Pembrey featured as a witness on the Moral Maze on BBC Radio 4, discussing this issue on 12 March 2008. The title of the programme was 'Whose Baby is it Anyway?' Dr Steve Emery, one of the speakers at the debate, was also a witness on the programme.
The debate for which PET received the greatest credit in press coverage was 'Cousin Marriage', with PET credited in coverage by the Observer and Guardian newspapers and by BBC News.
Rabbi Jonathan Romain gave an interview about PET's annual conference on BBC Radio Scotland and PET Director Sarah Norcross did likewise on BBC Three Counties Radio. Journalists from the Guardian newspaper and the journal Nature attended, with a Guardian journalist covering the conference on the Guardian website.
Rebranding
PET obtained an offer of pro bono rebranding work from Thunder. This work has been successfully completed and the company has provided a visual link between PET and BioNews so that they have a common graphic identity. A new strapline was also chosen for PET - 'informing debate on genetics and assisted conception'. The logos and symbols will be used on the new websites and newsletter as well as stationery.
Websites
The design and construction of the new BioNews and PET websites is well underway. A sitemap and page layouts for the BioNews website have been drawn up, and terms and conditions for use of the website plus an advertising policy have been drafted. The creation of these new and more user friendly websites should enable PET to communicate more effectively with its audiences. PET expects the new websites to attract more visitors, and thus extend the reach and prominence of both PET and BioNews.
Operational Achievements
Personnel
Sarah Norcross (Director), Sandy Starr (Communications Officer) and Ailsa Stevens (part-time Science Information Officer) all started working for PET in 2007. The lack of a longstanding member of Staff in the office presented some minor challenges, but also gave PET a new impetus and fresh outlook. Longstanding employees Jess Buxton and Kirsty Horsey continue to work part time producing and editing PET's BioNews newsletter and website. Their experience and competence ensured minimum disruption to BioNews during a period of flux.
Ailsa Stevens is now employed by Jeans for Genes and seconded to PET for two days per week.
The new employees are now established in their roles and are working effectively as a highly motivated and committed team.
Financial situation
Due in large part to the receipt of grant funding from The Wellcome Trust and the Department of Health referred to above, PET's financial situation strengthened further during the year. This is reflected in the £60.865 increase in net current assets to £76,598. However a large part of the year-end reserves are committed to payment for consultancy and in-house work on the websites, yet to be completed and paid for.
Future financial viability will depend upon the continued support of grant funding bodies, customers for PET's writing and training work, sponsors, advertisers, private donors and our many greatly valued Friends, Volunteers and Advisers, without whose support we could not survive.

Future Developments
Websites
PET's main priority in 2009 will be the completion and launch of the PET and BioNews websites and the new look BioNews weekly email newsletter.
Friends scheme
The number of Friends supporting PET has grown during this year. However, once the new websites and email are finished a sustained and systematic Friends subscription drive will begin.
Office refurbishment
The PET office is in need of refurbishment. This is important for Staff morale and for recruiting and retaining Volunteers. The office is to be repainted throughout and recarpeted, thanks to a generous donation.
Volunteers
PET successfully recruited several high calibre Volunteers in 2008 and hopes to repeat this in 2009. 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.
Events
PET will carry out more debates and will hold an annual conference.
Funding
PET will be applying for several grants for 2010-2011. PET will start to generate revenue from selling advertising space on our websites and email newsletter. The jobs and opportunities advertisements will continue.
PET will continue to seek additional sponsorship for all its events as the cumulative benefit of this source of funds makes a significant difference to our effectiveness.

Approval
This report was approved by the Trustees on 20 October 2009 and signed on their behalf by Professor Marcus Pembrey (Trustee).