Page URL: https://www.progress.org.uk/trusteesreport2010
This document is part of the Progress Educational Trust (PET)'s reports and accounts for the year ended 31 March 2010, as submitted to the Charity Commission.
The charity's 2014, 2013, 2012, 2011, 2009, 2008 and 2007 reports and accounts are also available on this website.

Trustees' Report for the year ended 31 March 2010

The Trustees present their report for the year ended 31 March 2010.

Charity information
Trustees: Professor Marcus Pembrey (Chair)
Tony Hickinbotham
John Parsons
Advisory Committee: Malcolm Hodgson (Chair)
Pat Bristow
Dr Jess Buxton
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
Dr Anna Smajdor
Dr Alan Thornhill
Charity number: 1011897
Charity offices: 140 Gray's Inn Road, London, WC1X 8AX, UK
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
Charities Aid Foundation Bank, 25 Kings Hill Avenue, Kings Hill, West Malling, Kent ME19 4QJ, UK

Trustees
Those named under 'Charity information' served as indicated for the year ended 31 March 2010. Professor Marcus Pembrey continued as Chair.
All Trustees give of their time freely and no remuneration or expenses were paid to them in the year.

Advisory Committee
The Advisory Committee has 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 three 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 Advisers 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 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 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 2009-2010 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.
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. Over 600 people attended our events held during this year. 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 the reach of the events and media coverage helped to bring the debate on these topics to an even wider audience.
The benefits of PET's activities were carefully balanced against potential harm or detriment. Two of PET's activities involved issues concerning mental health, and care was used in tackling them so as to ensure that they were conducted with sensitivity.
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 on PET's website and the relaunched BioNews website and 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, underwent a major redevelopment thanks to a Section 64 grant from the Department of Health and a Society Award Grant from the Wellcome Trust. The Trustees are very grateful for their support.
The aim was to realise the potential of BioNews to provide authoritative commentary and informed debate on issues in assisted conception, genetics and embryo research.
Technical and design improvements were made to both the website and the email newsletter, which improved both their appearance and their functionality. The new website and newsletter were launched in July 2009.
This redevelopment work has enabled BioNews to achieve greater prominence and visibility. Work on search engine optimisation has been undertaken, as a consequence of which the new website's prominence on Google and elsewhere has been high from launch onward. BioNews has also been accepted as a news source on Google News. One of the major benefits of BioNews being on Google News is a likely increase of traffic, and a likely influx of users with no prior knowledge of or relationship to BioNews or to PET.
As the redeveloped BioNews website is less than a year old, it is too early to say what the impact will be on subscriber numbers. However, initial indications are promising and BioNews has attracted a growing number of subscribers.
BioNews is also attracting a wider variety of writers for its opinion pieces, from Conservative MPs to a mother of a child with Asperger's syndrome. BioNews now regularly publishes two comment pieces per edition.
The number of Volunteer Writers at BioNews has continued to grow, from 16 writers last year to over 30.
BioNews Internships
The internship scheme to train postgraduate students in the art of science writing has been expanded. In addition to the two PhD students from University College London who participate each term, since September 2009 a PhD student from King's College London also participates each term.
Annual Conference
Does Genetics Matter? Help, Hype and the New Horizon of Epigenetics
PET's annual conference was held on 18 November 2009 at Clifford Chance.
What was it about? As genetics vies with stem cells for centre stage in human biomedical research, there are dangers of both overselling future benefits (for example, the power of personal genomics) and overlooking past triumphs (for example, help for families threatened by serious monogenic/Mendelian disease). PET's 2009 annual conference provided a critical examination of the current state of play in human genetics. It was the first public event to address epigenetics before a mixed lay and specialist audience, and it featured exciting new insights into the epigenetic capture of early developmental experience and how this might explain the link between fetal/childhood adversity and later risk of adult disease.
Speakers: Professor Sir John Burn
Professor Dian Donnai
Professor Steve Jones
Professor Mark McCarthy
Professor Irwin McLean
Professor David Melzer
Dr Jonathan Mill
Professor Marcus Pembrey
Professor Karen Temple
Professor Adrian Thrasher
Chairs: Professor Dian Donnai
Professor Steve Humphries
Dr Christine Patch
Audience: Regulators and policymakers, geneticists, academics, biomedical researchers and practitioners, ethicists, school students, journalists. Other charities sent representatives, including the National Gamete Donation Trust and the Chronic Granulomatus Disorder Research Trust.
The conference benefited from financial support from the Medical Research Council and Affirmetrix, as well as several publishers. The law firm Clifford Chance donated the venue and catering. The Trustees are very grateful for all the support received.
Parliamentary and Policy Work
The focus of PET's policy work was the implementation of the Human Fertilisation and Embryology Act 2009 and the Regulations relating to this legislation. Most notably, PET submitted a written response to the Department of Health's consultation on a review of Parental Order Regulations. PET also prepared briefings on the Human Fertilisation and Embryology (Storage Period for Gametes and Embryos) Regulations 2009, in conjunction with the Turner Syndrome Support Society.
PET submitted a written response to the UK Human Genetics Commission consultation, 'A Common Framework of Principles for direct-to-consumer genetic testing services: Principles and Consultation Questions'.
Booklets
PET was contracted by Galton Institute to write a series of booklets at the end of 2007. Work on the second of these booklets, entitled 'A Guide to Stem Cells' and written by BioNews Genetics Editor Dr Jess Buxton, was completed in 2009. PET will begin work on a third booklet entitled 'Genetics and Epigenetics in Human Disease' in 2010. These publications enable our beneficiaries to access information on these topics more easily and are written in an easy to understand style.
Ova Patient Magazine
PET has continued to write articles for Ova magazine, a fertility patient magazine produced by the London Women's Clinic.
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 Warwick in August 2009.
Jeans for Genes
PET undertook consultancy work for the charity Jeans for Genes, advising it on genetics for its schools' packs and other activities.
Friends of 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.
Debates
All PET's debates were free to attend, and across the four events a total of 500 people attended ranging in age from 16 – 85.
Registering Concern: Should Anonymous Gamete Donors Be Encouraged to Reregister and If So How?
This debate took place on 11 June 2009 at the Houses of Parliament.
What was it about? The entitlement to anonymity of UK sperm and egg donors ended in 2005. Because this change in law applies only prospectively, it remains difficult if not impossible for previous generations of donor-conceived individuals to locate their genetic parents and other genetic relatives. Initiatives such as UK DonorLink and its overseas equivalents have done much to redress this, but the only thoroughgoing solution at present is for anonymity-era donors to elect to join the non-anonymous donor register. But how does one solicit consent from a group of people whose identity is, by definition, unknown?
Speakers: Will Calder
David Gollancz
Danielle Hamm
Dr Jennifer Speirs
Chair: Dr Allan Pacey
Funding for this event was provided by the National Gamete Donation Trust and the Donor Conception Network. Additional sponsorship was provided by publishers and solicitors. The Trustees are most grateful for their cooperation and support. The audience included sperm donors, donor conceived individuals and parents of children born through donor conception.
Banking Crisis: What Should Be Done About the Sperm Donor Shortage?
This debate took place on 25 June 2009 at the Royal Society of Medicine.
What was it about? An acute shortage of donor sperm is diminishing the capacity of the UK's public and private health sectors to treat infertility, resulting in growing concern and lengthening waiting lists at clinics. The shortage is widely attributed to the removal of entitlement to donor anonymity. Since this came into force, the total number of donors has actually risen slightly, but this has been countervailed by a decreasing willingness to donate sperm to banks for use by multiple families, resulting in a worsening shortage overall.
Speakers: Professor Susan Golombok
Dr Mark Hamilton
Dr Allan Pacey
Laurence Shaw
Laura Witjens
Chair: Professor Emily Jackson
Funding for this event was provided by the British Fertility Society and it was organised in conjunction with the Royal Society of Medicine. Additional sponsorship was provided by an American sperm bank Xytex, publishers and solicitors. The Trustees are most grateful for their collaboration and support. The audience included regulators, clinicians, those needing sperm donors, as well as charities representing their interests such as the Donor Conception Network.
Spectrum of Opinion: Genes, Autism and Psychological Spectrum Disorders
The Trustees are most grateful to the Wellcome Trust for a People Award grant for the 'Spectrum of Opinion' project. The project's aim is to improve public and professional understanding of the respective genetic and non-genetic aspects of psychological spectrum disorders, and to initiate constructive and critical debate about the very concept of the 'spectrum'.
The project comprised two debates and the creation of a resource pack for use in the sixth-form classroom. Both events were free to attend, and attracted large audiences. The school resource pack will be finalised in May 2010, and will be piloted in Robert Napier School in Gillingham, Kent.
From Autism to Asperger's Syndrome: Disentangling the Genetics and Sociology of the Autism Spectrum
This debate took place on 20 October 2009 at the Houses of Parliament.
What was it about? This public debate sought to clarify the genetic and non-genetic aspects of autism, with experts presenting the latest thinking on autism from a range of contrasting perspectives, and a particular focus on the concept of the 'spectrum' and the challenges it throws up. The upshot of the 'spectrum' concept as applied to autism has been that this diagnostic category now encompasses an enormous range of individuals, from those with 'classical' autism as conceived by Leo Kanner, to those with 'high-functioning' autism as conceived by Hans Asperger.
Speakers: Professor Simon Baron-Cohen
Dr Michael Fitzpatrick
Dr Elisabeth Hill
Chair: Professor Jeremy Turk
The audience included a party of 20 sixth-formers and three teachers from Robert Napier School, mental health professionals, and individuals with or caring for someone with a mental health condition.
Marked for Life: Are Genetic Markers Helpful in Understanding Psychological Disorders?
This debate took place on 3 March 2010 at the Royal Society of Medicine.
What was it about? What, if anything, does such genetic and epigenetic research mean for those with psychological disorders, their families and their carers? How does the heritability of these conditions relate to genetic, environmental and stochastic (random) factors? Can society's contribution to psychological disorders be usefully captured by categories such as 'gene' and 'environment', or does it need to be considered separately? If you are found to have 'the gene for' a disorder (as the popular expression has it), does this effectively mean you are marked for life?
Speakers: Professor Derek Bolton
Professor Nick Craddock
Fenno Outen
Chair: Dr Anand Saggar
The PET was pleased to be able to organise the event in conjunction with the Royal Society of Medicine. The audience included psychiatrists and geneticists, GCSE and A level students, and representatives from the Fragile X Society and UK Stem Cell Bank.
PET Staff attendance at other conferences
PET Staff attended many other conferences and events in 2009-2010. 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 May 2009 PET Communications Officer Sandy Starr attended 'Innovative Therapies and Rare Diseases: Are We There Yet?', the annual conference of Genetic Alliance UK, which which also saw the launch of Rare Disease UK.
In June 2009, PET Director Sarah Norcross attended the first ever Primary Care Trust Commissioners' Fertility Conference, at which Gillian Merron - Minister of State for Public Health - launched Regulated Fertility Services: A Commissioning Aid.
In September 2009, BioNews sponsored and Sarah Norcross spoke at a conference entitled 'Motherhood in the 21st Century' at University College London.
In October 2009, Sarah Norcross led a workshop at, and Sandy Starr attended, 'Are You Ready?', the annual conference of the Human Fertilisation and Embryology Authority. The workshop led by Sarah identified upcoming trends, predicted scientific advances, and highlighted possible changing priorities for patients and professionals.
In October 2009, Sandy Starr spoke at an event entitled 'Age of Autism: Rethinking "Normal"', organised by the Institute of Ideas at Foyles bookshop.
In October 2009, Sandy Starr was involved in two debates at the 5th annual Battle of Ideas festival organised by the Institute of Ideas at the Royal College of Art. First, he spoke (alongside PET Adviser Alan Thornhill) at a debate entitled 'Frankenstein's Daughters: From Science Fiction to Science Fact?' Second, he judged a student debate of the motion 'Copyright Benefits the Arts', a showcase for the Debating Matters international sixth-form debating competition.
In February 2010, Sarah Norcross gave the opening presentation at, and also manned an exhibition stand at, a conference entitled 'Fertility Nursing: Delivering High Quality care in 2010' at the Royal College of Nursing.
In March 2010, Sarah Norcross gave a presentation at, and she and Sandy Starr manned an exhibition stand at, 'Journeys in the Genetic Jungle: Gene Therapies and Stem Cell Therapies for the 21st Century', an event for schoolchildren organised at Royal Holloway University of London as an adjunct to the 7th Annual Conference of the British Society for Gene Therapy.
Media and press coverage
In July 2009, two speakers at PET's event 'Banking Crisis: What Should Be Done About The Sperm Donor Shortage?' (Laura Witjens and Laurence Shaw) were interviewed about the event on Woman's Hour on BBC Radio 4. Both speakers also wrote related articles for the Guardian newspaper, and the event was discussed in the British Medical Journal.
In November 2009, PET's annual conference 'Does Genetics Matter? Help, Hype and the New Horizon of Epigenetics' was discussed in the British Medical Journal.
PET Director Sarah Norcross appeared on BBC Breakfast News as an expert on access to infertility treatment.
Sarah Norcross appeared on BBC Radio Kent discussing saviour siblings when the film 'My Sister's Keeper' was released in the UK.
In October 2009, one of the presentations given at PET's event 'From Autism to Asperger's: Disentangling the Genetics and Sociology of the Autistic Spectrum' - the one by Dr Michael Fitzpatrick - was published on spiked.
In January 2010, PET's Founding Chair of Trustees Professor Marcus Pembrey was interviewed by Time magazine in the 'Why your DNA isn't your destiny'.
In March 2010, PET's event 'Marked for Life: Are Genetic Markers Helpful in Understanding Psychological Disorders?' was discussed in Clinica.
Websites
The redeveloped BioNews website went live in July 2009, together with the new look BioNews email newsletter. The new website allows BioNews subscribers to choose the format in which they receive the BioNews newsletter: HTML Alert, HTML Full Text, or Plain Text. The BioNews website has many new features, including an extensive 'Events' listing section and a comprehensive 'People' page, so as to credit fully the contributions of BioNews volunteer writers.
The separate PET website had its 'soft launch' in February 2010, and is still under construction. In the interests of transparency, the Trustees' Annual Reports and Accounts from 2007 onwards are published on the website. Work will continue on this website in 2010.

Operational Achievements
Personnel
Sarah Norcross (Director), Sandy Starr (Communications Officer) and Dr Kirsty Horsey (part time Reproduction Editor) continued to work at PET.
Dr Jess Buxton stepped down as Genetics Editor in November 2009 and Ailsa Stevens (Assistant Editor) was promoted to Genetics Editor. Dr Vivienne Raper joined the team as a part-time Assistant Editor in December 2009.
Dr Jess Buxton has joined PET's Advisory Committee, and has continued to support both PET and BioNews in that capacity.
Volunteers
PET has benefitted from a steady stream of highly motivated and professional Volunteers. During 2009-2010 the Volunteers have undertaken a range of activities, from editing the vast BioNews archive to assisting at PET events. Volunteers have also assisted with the accounts and budget, as well as the marketing strategy.
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.
Office refurbishment
The PET office has been repainted throughout, thanks to a generous donation. Further improvements including a new carpet are yet to be carried out.
Advertisements in BioNews
BioNews continues to carry jobs and opportunities advertisements in order to generate additional revenue while providing an additional useful feature for readers. During the period, BioNews started to take general advertising on the website and in the newsletter, as part of a BioNews sustainability plan.
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 remained strong throughout the year. Net current assets at year end amounted to £42,300. 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 PET could not survive.

Future Developments
Incorporation
PET intends to change its legal status from charitable trust to charitable company and will start the incorporation process during 2010, with a view to operating as a limited company from 1 April 2011. PET will continue to carry out the same charitable objectives as and when this change is made.
Website
PET's main priority in 2010 will be the completion of PET website, populating it with additional content and adding a 'PET shop' so that visitors can purchase publications and tickets for PET events online. PET will monitor web traffic data to assess its impact.
BioNews
PET will carry out a survey of BioNews readers in 2010 to gain an insight in to what they want from BioNews each week and to build a reader profile. PET will also monitor the number of comments on the BioNews website.
Science Behind the News
PET will seek funding to launch a 'Science Behind the News' feature, a new section of the BioNews website that will provide clear and concise explanations of key underlying science topics in the areas of genetics, assisted reproduction, embryology and stem cells. This will be a means of providing the layperson with context and continuity, when science-related stories break and there is a succession of assertions and headlines that may be at best confusing and at worst misleading or inaccurate.
Friends of PET Scheme
The number of Friends supporting PET remained stable during this year, and it is hoped that the number of Friends will increase as the marketing strategy is implemented and people can become a Friend online.
Events
PET will organise further public debates, and will hold an annual conference entitled 'Passport to Parenthood: The Ethics and Evidence behind Cross-Border Reproductive Care' in November 2010.
Funding
PET will be applying for several grants for 2010-2011. PET expects to generate revenue from writing, advisory and consultancy contacts with existing customers and from selling advertising space on the websites and in email newsletter. The jobs and opportunities advertisements will continue.

Approval
This report was approved by the Trustees on 15 December 2010 and signed on their behalf by Professor Marcus Pembrey (Trustee).