Page URL: https://www.progress.org.uk/trusteesreport2008
This document is part of the Progress Educational Trust (PET)'s reports and accounts for the year ended 31 March 2008, as submitted to the Charity Commission.
The charity's 2014, 2013, 2012, 2011, 2010, 2009 and 2007 reports and accounts are also available on this website.

Trustees' Report for the year ended 31 March 2008

The Trustees present their report for the year ended 31 March 2008.

Charity information
Trustees: Professor Marcus Pembrey (Chair)
Laura Riley
John Parsons (from July 2007)
Juliet Tizzard (until July 2007)
Advisory Committee: Dr Kamal Ahuja
Janric Craigavon
Malcolm Hodgson
Dr Fred Kavalier
Alastair Kent
Stuart Lavery
Trisha Macnair
Dr Stephen Minger
Clare Murray
John Parsons (until July 2007)
Dr Elisabeth Rosser
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 2008. Professor Marcus Pembrey continued as Chair. Laura Riley and Juliet Tizzard became Trustees in March 2007, these positions being formally ratified at the 3 April 2007 meeting. John Parsons was appointed a Trustee, and his position was formally ratified at the 3 July 2007 meeting. Juliet Tizzard resigned as a Trustee on 18 July 2007.

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. This helps determine whether they have the right level of skills and commitment to act as Trustees.

Advisory Committee
The members of the Advisory Committee met once during the period.

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.

Main objectives and strategies
The fundamental objective of PET is to help create an environment in which ethically sound research and practices in genetic services and assisted reproduction will thrive. The ultimate beneficiaries are families threatened by genetic disease or infertility, including parents aspiring to give birth to healthy children.
The principal way in which PET seeks to achieve this objective is to provide information, comment and debate on assisted reproduction, human 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.
PET operates in the civic space between regulators, such as the Human Fertilisation and Embryology Authority, the Government and the Department of Health on the one hand and the scientists, practitioners and, most importantly, those who are directly or potentially affected by developments in this area on the other. In this way, PET aims to assist interested stakeholders bring timely influence to bear on policy makers as new advances and issues arise.
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.
Collaborations with reputable and established organisations are being maintained and expanded to enable PET to reach out to a larger audience. Communication is key to PET's work and PET will continue to engage with its audience via the spoken word, print and internet publications and websites. We have identified the redevelopment of our websites as a key component of our future communication strategy.

Development activities and achievements
BioNews
BioNews, the charity's free online news service and comment resource attracted a growing number of subscribers. Funding came from the Department of Health to underpin BioNews during the Parliamentary review of the Human Fertilisation and Embryology Act 1990.
In May 2007 PET decided to make honoraria payments of £10 per story to the Volunteer Writers at BioNews. The rationale for this decision was to provide the authors with a token reward for their time and expertise and this step has also improved their adherence to deadlines.
In February 2008 PET was awarded a Section 64 grant by the Department of Health to develop BioNews. It is PET's intention to use this grant to develop the BioNews contacts database, the website and the format of the BioNews weekly email. This grant is due to be received over the course of the next two financial years (i.e. April 2008-2009 and April 2009-10).
BioNews Internships
PET negotiated a contract with University College London (UCL) such that BioNews editors would select and train two UCL PhD science students per term in the art of science reporting. The first two interns started in January 2008 and successfully completed the course. PET expects this arrangement to continue.
Annual Conference
Reproducing Regulation: New Laws for Fertility Treatment and Embryo Research – Will We Get It Right?
PET's annual conference was held on 1 November 2007 at the Institute of Child Health.
What was it about? This one-day conference explored the Human Tissues and Embryos (Draft) Bill - an early iteration of what subsequently became the Human Fertilisation and Embryology Bill - which was intended to revise and supersede the Human Fertilisation and Embryology Act 1990 to reflect developments in science and society.
Speakers: Phil Willis MP
James Lawford-Davies
Maureen McTeer
Dr Tom Shakespeare
Dr Stephen Minger
John Parsons
Professor Eric Blyth
Chairs: Professor Alison Murdoch
Baroness Ruth Deech
The conference proved to be very timely as the Bill was referred to in the Queen's Speech on 6 November.
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 the charity's expertise was used to further develop the packs. We expect our relationship with Jeans for Genes to continue.
IT upgrade
IT hardware and software deficiencies were severely hampering both efficiency and productivity. As a charity with limited Staff and resources, such impediments were especially debilitating - for example, incompatibility between our archaic office setup and the home or portable computers of our Staff prevented flexible working.
PET's technology was old - a decade old, in the case of some of our hardware and software. PET carried out an IT upgrade in October 2007, which enabled the Staff to carry out their duties more effectively.
Parliamentary work
PET is one of a group of charities, organisations and individuals who have attended Parliamentary meetings on the Human Fertilisation and Embryology Bill. The purpose of these meetings is 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 has helped to co-ordinate and chair some of these meetings as well as assisted others to prepare and circulate briefings.
Debate on the Human Fertilisation and Embryology Bill
Dad Not Included: Should the Need for a Father Be Enshrined in Law?
This debate took place on 14 January 2008 at the Palace of Westminster and was accordingly sponsored by Members of Parliament from the three major parties - Dr Evan Harris (Liberal Democrat), Robert Key (Conservative) and Dari Taylor (Labour).
What was it about? Those offering IVF and associated techniques are required, by the Human Fertilisation and Embryology Act 1990, to consider the welfare of the child who might be born as a result - including the child's 'need for a father'. The inclusion of the 'need for a father' in the Act means that this need must be considered before lesbian couples and single women can access fertility treatment. The Human Fertilisation and Embryology Bill which was at that time about to be debated in Parliament proposed to remove the reference to the 'need for a father' from this area of law, begging two questions. First, do children need fathers? Second, is it necessary or desirable that the need for a father be enshrined in law? This debate at the Houses of Parliament took place the day before the Lords debated the issue.
Speakers: Baroness Ruth Deech (UK Independent Adjudicator for Higher Education, former Chair of the Human Fertilisation and Embryology Authority)
Fiona MacCallum (Associate Professor of Psychology at the University of Warwick)
Natalie Gamble (solicitor specialising in fertility law at Lester Aldridge and mother, together with her civil partner, of two donor-conceived children)
Chair: Rt Revd Lord Richard Harries (former Bishop of Oxford and Chair of the Ethics and Law Advisory Committee of the Human Fertilisation and Embryology Authority)
Financial sponsorship was obtained for this event from publishers, a firm of solicitors and a private fertility clinic.
Guide to Genetics
The charity continued to promote its Guide to Genetics as an educational resource. 1,000 copies of the guide were sold to the European Society for Human Reproduction and Embryology for distribution at their conference.
Booklets
PET negotiated a contract in November 2007 with the Galton Institute to write a series of booklets. Work on the first of these booklets, entitled A Guide to Preimplantation Genetic Diagnosis, began in January 2008. This is an ongoing project.
Opaldia
PET negotiated a contract to write the content for Gene Gems, Opaldia's patient newsletter. Opaldia is a private provider of genetic medicine and lifetime wellness programmes. PET commenced this work in May 2007 and carried out work on a quarterly basis. Due to Opaldia's financial difficulties, this work has been discontinued.
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. The charity again ran BSHG's press office at its annual conference held in York in September 2007. As a result of PET's work, research presented at the meeting was reported in the local and national media. This work is expected to continue.
PET newsletter
The Friends of PET newsletter was revived under the title Progress Report in December 2007 and was distributed to Friends. The second edition was published in March. PET intends to continue to write and circulate Progress Report quarterly as a means of keeping the Friends up to date with the charity's affairs.
European Society for Human Reproduction and Embryology conference
PET Staff were unable to attend the European Society for Human Reproduction and Embryology (ESHRE) Annual Meeting this year due to one of the editor's being on maternity leave. However, the BioNews team made use of the press releases issued during the conference to enable in-depth, accurate reporting of the studies presented at ESHRE, focussing on those of most interest to the BioNews readership.
PET Staff attendance at other conferences
Assisted Reproduction: Regulation with Compassion? (Westminster Health Forum, London, 25 October 2007)
Ethics Day (British Fertility Society, Cambridge, 5 December 2007)
Genethics Club (Ethox Centre, London, 30 January 2008)
31st Plenary Meeting (Human Genetics Commission, Cambridge, 6 February 2008
The Director, Sarah Norcross, gave a presentation as part of a Reproduction and Development MSc Spring Workshop (Bristol Centre for Reproductive Medicine, Bristol, 13 March 2008).
Wellcome Trust Debates
Two of the debates for which PET had received a public engagement award from the Wellcome Trust were held during this financial year.
Parents or Parliament: Embryo Testing - Who Decides?
This debate took place on 16 July 2007 in London.
What was it about? Should regulation of preimplantation genetic diagnosis (PGD) - the technique used to test embryos for genetic mutations that cause disease - be more strict than that of prenatal testing? Is it the Government's role to impose boundaries on PGD or should it be a decision for parents and their clinicians to make?
Speakers: Ann Furedi (Chief Executive, British Pregnancy Advisory Service)
Alison Lashwood (Consultant Nurse in Genetics and Preimplantation Genetic Diagnosis, Guy's and St Thomas' Hospital)
John Wyatt (Professor of Neonatal Paediatrics, University College London)
Chair: Professor Marcus Pembrey, Chair of Trustees, PET
Artificial Gametes: The What, Why and How of Creating Sperm and Eggs in the Laboratory
This debate was held in Newcastle upon Tyne on 12 February 2008, organised by PET and the Newcastle Centre for Life.
What was it about? Scientists in Newcastle can now produce human sperm from stem cells in the laboratory. This research is important for furthering our understanding of human development. If human eggs could be produced using similar methods in future, then this could potentially allow babies to be created without the need for testes or ovaries. Such innovation might have profound consequences for infertility treatment, sperm/egg donation and reproductive autonomy. This event explored both the cutting-edge science of artificial gametes and the social and ethical questions raised by their use.
Speakers: John Burn (Professor of Clinical Genetics and Head of the Institute of Human Genetics at Newcastle University)
Dr Anna Smajdor (Lecturer in Ethics at the University of East Anglia - arrived too late to speak due to travel difficulties)
Dr Donald Bruce (Director of Edinethics)
Chair: Alison Murdoch (Professor of Reproductive Medicine at Newcastle University)
Sponsorship for the event was obtained from publishers and a school that wished to recruit science teachers.
This public engagement work continued into the next financial year with a further two debates being held.
Celebration: 15th Anniversary of PET
An evening event was held at the Houses of Parliament on 28 November 2007, to celebrate PET's 15th anniversary. Diane Blood, who fought for and won the legal right to conceive using her dead husband's sperm, was the guest speaker. The event attracted some sponsorship but its primary purpose was to act as a thank you to Friends of the charity and donors.

Personnel
By April 2007 it was clear that only having one full time member of Staff in the office was below the critical mass needed to run the charity's activities (including debates, conference and BioNews commissioning) and to fundraise through grants and contracts. In the later part of 2007 and in 2008, the charity enjoyed further success in fundraising which has allowed PET to take on new work and Staff. A part-time assistant Dannielle Hamm was recruited to work 1.5 days per week between May and October 2007. Khadija Ibrahim, the director, left suddenly in June following a bereavement. Jess Buxton was appointed Acting Director until a new director was recruited. A new Communications Officer, Sandy Starr, was recruited in July 2007. Ailsa Stevens was recruited as an editorial assistant on BioNews from 1 August. Sarah Norcross was appointed Director and started in the role on 3 December 2007. Jess Buxton and Kirsty Horsey continued to work part-time editing BioNews. Kirsty was on maternity leave for part of the year.

Financial situation
The charity took significant steps to overcome the financial difficulties of the previous twelve months. Grant applications were successful and writing contracts were secured. This enabled the charity to recruit more Staff and commence an IT overhaul which has increased productivity. PET's financial situation has continued to improve.

Future developments
A new Director, a new Communications Officer and a new Science Information Officer have now joined the Progress team. The level of activity has increased substantially. The charity has played an active role in airing issues relating to revision of the Human Fertilisation and Embryology Bill, arranged more public debates than ever before and produced a greater volume of educational material than in recent years. PET is confident that this newfound momentum will continue. Plans for the future are set out below.
Websites
PET is currently maintaining a mailing list and websites at three different domains, with disparate means of administration and publication. The BioNews website is especially hamstrung by defective content management and related difficulties, because it is updated so regularly and because it contains an ever-expanding archive of around 3,000 articles.
Young people, and the public more broadly, now rely heavily upon the internet and related technologies - such as the 'Web 2.0' generation of communities, services and multimedia - to obtain information and exchange views. If the technology used to publish and manage BioNews is brought up to current standards, then PET will be in a position to disseminate information far more widely, to present that information in more diverse ways and to cross-reference the material in the BioNews archive so that it becomes more conspicuous and accessible.
PET has been successful in winning funding to implement these changes. As part of the process, PET has developed a strategy designed to move BioNews towards sustainability by introducing new revenue generation schemes, while simultaneously increasing the number and range of subscribers to the weekly BioNews email and increasing visitors to the website.
Rebranding
PET intends to carry out rebranding work to link PET and BioNews so that they have a common graphic identity.
Friends scheme
PET aims to increase the number of Friends in its membership scheme to add to this source of core funding through systematic recruitment drives. The charity aims to add value to the membership scheme.
Volunteers
PET intends to recruit additional Volunteers.
Events
PET will carry out more debates and will continue to hold an annual conference.

Approval
This report was approved by the Trustees on 30 September 2008 and signed on their behalf by Professor Marcus Pembrey (Trustee).