25 June 2018

6.30pm8.30pm on 26 June 2018

This event will explore questions raised by Big Data, the 100,000 Genomes Project and the new national NHS Genomic Medicine Service. The event is produced by Progress Educational Trust in partnership with Genomics England, as part of the Genomics Conversation.

The discussion will be chaired by TIMANDRA HARKNESS (author of the book Big Data: Does Size Matter?), with speakers including PROFESSOR ANN DALTON (Sheffield Children’s Hospital), PROFESSOR ANTHONY BROOKES (University of Leicester), PROFESSOR TIM HUBBARD (Genomics England) and DR NATALIE BANNER (Understanding Patient Data).

This event is taking place at University College London‘s Institute of Child Health. Email sstarr [at] progress.org.uk to book your FREE place(s).


22 November 2016

Progress Educational Trust public conference

Wednesday 7 December 2016, 9.30am5pm

Speakers include PROFESSOR MAGDALENA ZERNICKA-GOETZ from the University of Cambridge (leader of recent research in which human embryos were cultured in vitro for 13 days, the longest time ever achieved), DR KATHY NIAKAN from the Francis Crick Institute (the first researcher licensed by the UK regulator to use genome editing in human embryo research), and LORD GEORGE CAREY from the House of Lords (former Archbishop of Canterbury).

There will also be Keynote Addresses by BARONESS MARY WARNOCK (who originally proposed the 14-day limit on human embryo research, and whose Warnock Report is arguably the world’s most influential analysis of the ethics of assisted reproduction and embryo research) and PROFESSOR SIR IAN WILMUT (creator of Dolly the sheep, the first mammal ever cloned from an adult cell).

Other confirmed speakers and chairs include:

DR SIMON FISHEL (Founder and President of CARE Fertility, and one of the first researchers to demonstrate that embryos are capable of responding to their environment)

PROFESSOR BRUCE WHITELAW (Deputy Director of the Roslin Institute, and pioneer in research involving transgenic and genome-edited animals)

SALLY CHESHIRE (Chair of the Human Fertilisation and Embryology Authority)

PROFESSOR ALISON MURDOCH (Former Director of the Newcastle Fertility Centre, and leader of the first research in which an early embryo was created from a human nuclear transfer procedure)

PROFESSOR DAVID JONES (Director of the Anscombe Bioethics Centre)

PROFESSOR SARAH FRANKLIN (Director of the University of Cambridge‘s Reproductive Sociology Research Group)

PROFESSOR STEPHEN WILKINSON (bioethicist and author of the book Choosing Tomorrow’s Children: The Ethics Of Selective Reproduction)

DR ROGER HIGHFIELD (Director of External Affairs at the Science Museum Group)

FIONA FOX (Chair of the Progress Educational Trust and Chief Executive of the Science Media Centre)

SARAH NORCROSS (Director of the Progress Educational Trust)

Conference sessions include:





Symposium: How Companies Use Genetic and Health Data: Protecting Patient Confidence

6 January 2015

Friday 30th January 2015, 09:30 – 16:30, Sheffield Law School

Sheffield Institute for Biotechnology Law and Ethics (SIBLE) and the Wellcome Trust are holding a symposium to consider the appropriate use of patient health and genetic data by commercial organisations.

The symposium will provide an opportunity to hear and discuss the approach to commercial access to data taken by some key national and international projects and resources. There is evidence that commercial access to data is relevant to public confidence in the safeguards and governance designed to protect health and genetic data. What controls on access currently exist? To what extent do these controls currently regulate access by commercial organisations?

This is an opportunity to share current practice and consider alternative views on commercial access to genetic and health data in the future. From a commercial perspective, what are potential uses of genetic and health data in practice? From a patient and public perspective, what approach toward regulating access to commercial organisations, or for commercial use, might best promote public trust and confidence?

The event is open to anyone interested in the issues and may be relevant to policy makers, those responsible for managing access to health and genetic resources, patients, and members of the public.

Programme and booking information here.

For enquiries relating to this event please contact the Research Support Team at the School of Law: law-research@sheffield.ac.uk

Job: Policy Analyst (Biomedical Law and Regulation)

7 November 2013

Policy Analyst (Biomedical Law and Regulation)
PHG Foundation

Cambridge, UK
£35 – 40K per annum plus benefits
Full time or part time (min 28 hours p.w.)

The PHG Foundation is looking for a talented and enthusiastic professional with a legal background who is passionate about seeing biomedical research translated effectively into healthcare. Working as part of a multidisciplinary team, your role will be to provide sound legal and regulatory analysis for the Foundation’s health policy projects.

We are open-minded about background, but you must have a good first degree in law, social science, philosophy or similar subject; an excellent grasp of the legal, regulatory and ethical landscape around genomics and health; and first class analytical, drafting and communication skills. A postgraduate qualification in medical law, ethics or similar would be a distinct advantage but, most importantly, you must be able to transfer your academic grounding into actionable policy applications.

You will be an excellent networker and have the personal qualities to work creatively and effectively in a small team of highly-motivated colleagues who are committed to developing the PHG Foundation as an international health policy institute.

The Foundation is an equal opportunity employer.

The deadline for applications is 5pm, Thursday 14 November 2013. Interviews will be held in Cambridge on 25 November 2013.

Lectures: CMLE Lent Lectures on ‘Genetics, Ethics and the Law’

31 January 2013

Tuesday 5th February, 1-2pm, Moot Court, Somerset House
Dr Nina Hallowell, Programme Lead, PHG Foundation
“Cancer Genetics: Socioethics and Decision-making about Risk”

NB The remaining lectures are all on Thursdays.

Thursday 21st February, 1-2pm, Moot Court, Somerset House
Professor Ruth Chadwick, Distinguished Research Professor, University of Cardiff
“Risk and Responsibility: From Genome to Epigene”

Thursday 28th February, 1-2pm, Moot Court, Somerset House
Professor Mike Parker, ETHOX Centre, Oxford
“Ethical Problems and Genetics Practice”

Thursday 7th March, 1-2pm, Moot Court, Somerset House
Professor Anneke Lucassen, Professor of Clinical Genetics, University of Southhampton
“Genetic Medicine in the 21st Century: Do we Need to Approach Consent and Confidentiality Differently?”

Thursday 14th March, 1-2pm, Moot Court, Somerset House
Professor Graeme Laurie, Professor of Medical Jurisprudence,University of Edinburgh
“The Right Not to Know? Privacy Implications of Feedback Policies involving Genetic Data”

The lectures are open to all and are free to attend. Visitors without King’s identification will need to enter Somerset House via the East Wing Reception and ask for directions. This can be found towards the lower right-hand side of the courtyard behind the main King’s driveway on the Strand.

Conference: Regulation and Governance of Medical Database Research in the UK

31 May 2011

17th June 2011

Sheffield Institute of Biotechnology Law and Ethics, School of Law, University of Sheffield

From the conference website: “Organised by Christopher Roy-Toole, Sebastian Sethe and Mark Taylor (Sheffield)

Confirmed speakers on the day include:

  • Prof. Sir John Burn (Newcastle)
  • Prof. Graeme Laurie (Edinburgh)
  • David Townend (Maastricht)
  • Prof. Deryck Beyleveld (Durham)

We expect also to welcome representatives of the National Information Governance Board for Health and Social Care (NIGB). This is a very topical matter given that the Coalition Government have announced plans to create a new Health Research Agency. This one day workshop will discuss the future face of NHS Information Governance in medical database research.

In particular, we will discuss the governance arrangements for ‘Research Data Banks’ and the implications of the organisational changes affecting the National Information Governance Board for Health and Social Care.We will consider the possibilities of generic ethical approval for ‘Research Data Banks’ and alternative routes to the lawful processing of confidential patient information for research purposes.

We will examine the regulatory basis for the NIHR Research Capability Programme amongst other examples and we shall also discuss wider ethical and legal issues surrounding Privacy in Research. There will be a specific focus on the challenges and opportunities thrown up by genomic research.”

Conference Fee: Full Registration £20; Student Registration £10

Job: Genomics Fellowship at Duke University

9 February 2011

Durham, NC
Duke Law School
Fellowship Position

Duke University’s Center for Public Genomics (CpG) is seeking a Fellow to work at Duke Law School for a one- or two-year term beginning in the summer or fall of 2011. The CpG was established in 2004 to understand the benefits and risks of intellectual property protections in genomics. The CpG is funded by the National Human Genome Research Institute and is a national Center of Excellence in Ethical, Legal, and Social Implications Research. Duke schools affiliated with the CpG include Duke Law School.


The Fellow will be responsible for a variety of tasks within the CpG that are centered at Duke Law School. His or her focus will be the “Genomics as Information” Project, which seeks to identify, analyze, and propose policy responses to ownership challenges raised as genomic research becomes increasingly based on pure information. The Fellow will conduct research as part of a team led by the Principal Investigator of the project, Professor Arti Rai. The team also includes professors at the Columbia School of Public Health, Harvard Medical School, and various research assistants.


Qualified candidates should hold an advanced degree in law (J.D.). Coursework or practice in the area of intellectual property required. A scientific or technical background is desirable, but not required. Familiarity with statistics and statistical programs (e.g. STATA) is desirable, but not required. Salary is approximately $45,000 to $50,000 annually, depending upon experience.


For additional details and application procedures, visit the Duke Center for Genome Ethics, Law & Policy website.

Symposium: Intellectual property and the biosciences

1 July 2010

White Rose IPBio Symposium and Summer School

Devonshire Hall, University of Leeds, 7-8 July 2010

With the recent overturning by a US court of patents on genes associated with breast cancer, questions about the role of intellectual property in the biological sciences are high on the agenda.  This meeting, comprising a one-day symposium and a half-day summer school, and bringing together international experts in law, science policy, history, philosophy, sociology and other disciplines, will aim to clarify key issues and explore ways forward.

The symposium will take place on Wednesday 7 July 2010 and will run from 9am to 6pm as follows:

09.00-09.20 Registration
09.20-09.30 Introduction by Gregory Radick (Centre for History and Philosophy of Science, Leeds)
09.30-10.15 Robert Cook-Deegan (Institute for Genome Sciences and Policy, Duke): “Gene Patents and Policy: The Neverending Story”
10.15-11.00 Daniel Kevles (History, Yale): “Enforcing Intellectual Property Rights in Fruit Trees and Plants: Contracts, Patents and the Courts in the 1920s and Now”
11.00-11.30 Coffee break
11.30-12.15 Bronwyn Parry (Geography, Queen Mary, London): “Patents and the Challenge of ‘Sharewaring’ in Post-Genomic Bioscience: The Case of Model Mice”
12.15-13:00 Jane Calvert (Innogen, Edinburgh): “Ownership, Sharing and Community-Building in Synthetic Biology”
13.00-14.00 Lunch
14.00-14.45 Aurora Plomer (SIBLE, Sheffield): “Patent Boundaries: Global Challenges in Emerging Fields of Science”
14.45-15.30 Antony Taubman (IP Division, World Trade Organization): “Rights to Exclude, and Rights to be Included: Reviewing the Ethical Basis for IP in the Life Sciences”
15.30-16.00 Coffee break
16.00-16.45 Lady Lisa Markham (Harrison Goddard Foote, patent attorneys, Leeds): “Tiptoeing around Restrictions in Biotechnology Inventions: A Practitioner’s Experience”
16.45-17.30 Rebecca Eisenberg (Law, Michigan): “The Future of Diagnostic Patents”
17.30-18.00 Concluding discussion

A summer school will take place the next day, on the morning of Thursday 8 July 2010, and is intended to give postgraduate and postdoctoral researchers working in the broad areas of intellectual property and the biosciences an opportunity for feedback on recent work (in the form of pre-circulated papers).

Applications to the summer school are now closed.

To register for the symposium, please contact Berris Charnley, email: Berris.Charnley@gmail.com, postal address: Centre for History and Philosophy of Science, Department of Philosophy, University of Leeds, Leeds LS2 9JT.

The registration fee – which covers lunch and coffee – is £60.00, though it is hoped that a student subsidy will be available.

Places are limited so pre-registration is strongly encouraged.

Launched in May 2009 in association with the IPBio Network and with funding from the White Rose Consortium, this project seeks to provide staff and students across the White Rose universities – and across the disciplines bearing on intellectual property in the biological sciences – with new opportunities for collaboration, with each other and with some of the best scholars from around the world.

The White Rose IPBio Project Team are: at Sheffield, Aurora Plomer (Law), Margaret Llewelyn (Law) and Richard Jones (Physics); at York, Tom Baldwin (Philosophy) and Andrew Webster (Sociology); and at Leeds, Graham Dutfield (Law) and Gregory Radick (History and Philosophy of Science).  The Project Administrator is Berris Charnley (HPS, Leeds).

The symposium and summer school are co-located with the conference “Managing Knowledge in the Technosciences, 1850-2000” organized by the AHRC project “Owning and Disowning Invention”.  Further details can be found here.

Conference: data sharing, confidentiality and genomics

26 March 2010

International Data Sharing Conference 2010

20 – 22 September 2010

St Hugh’s College, Oxford

“Registration is now open for the International Data Sharing Conference 2010, which will bring together key figures from academia, research ethics committees and clinical practice to discuss how the increase in data storage and access are changing scientific practice, as well as raising a number of technological, legal, ethical and social challenges for people working in the field of genomics.

The conference will seek to address some of the challenges of data sharing
– such as: How should data-generators be rewarded for their efforts to the scientific community? Can we promise anonymity of research participants when whole sequences and phenotypic data are being used for research purposes? What is the best way to harmonise different datasets collected for different purposes? Should participants be fed back individual findings? Are our national research governance systems adequate to cope with global data sharing?

The conference will use a conversation format, using panels focussed on specific questions to generate insights into these issues. Our plenary sessions will focus on feedback, new technologies for data sharing, governance structures for research and safeguarding identifiability.
Speakers confirmed for our plenaries so far are: Ellen Wright Clayton, Jane Gitschier, Bartha Knoppers, Timothy Caulfield, and Brad Malin. In addition to the plenary panel sessions, there will be break out sessions.”

Applications for panels and individual applications to be part of a panel are currently open and will close on the 1st of April. There are also bursaries for people from developing countries and students that are funded by the Wellcome Trust. Registration is now open. For further details please do not hesitate to contact helexconference@dphpc.ox.ac.uk.

Workshop: The Impact of Genomics on Disease Classification

24 November 2009

December 2nd, 9.00am – 4pm
Location: Victor Salvi room, Millennium Centre, Cardiff Bay, Cardiff

Hosted by: ESRC Centre for Economic and Social Aspects of Genomics (Cesagen)

The ways in which technologies will evolve and touch the lives of patients in different contexts will depend on the numerous and complex ways in which ‘health systems’ interact with, shape and are in turn influenced by new science and technology. Whilst technologies and product innovation are developed in firms and research institutes that operate globally, health systems are largely nationally based. This means that new technologies, drugs and treatments may reach various sets of patients, doctors and other consumers in radically different ways.

It is also the case that there tends to be a profound gulf between researchers working on understanding innovation in life sciences and researchers of different health systems.  Thus understandings of the ways in which health systems and health innovation interact with each other are poorly understood. The seminars organised as part of this workstream aim to address this gap.


Dr. Nina Hallowell, Centre for Population Health Sciences, Edinburgh University

Professor Alan Horwitz, Sociology, Rutgers University

Professor Anneke Lucassen, School of Medicine, University of Southampton

Professor Michael Owen, Director of the MRC Centre for Neuropsychiatric Genetics and Genomics, Cardiff University

Dr. Katherine Payne, School of Medicine, Manchester University.

Please contact Adam Hedgecoe (hedgecoeam@cardiff.ac.uk) to confirm a place.