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).

Job: Research Fellowship (Socio-Legal) in the Centre for Biomedicine, Self and Society, The University of Edinburgh

18 June 2018

The Centre for Biomedicine, Self and Society is seeking an experienced researcher in the field of socio-legal studies to contribute to scholarly and engagement activities within this cross-College, cross-School initiative. The Centre, supported by the Wellcome Trust, seeks to effect lasting change in how we understand and influence the dynamic relationship between biomedicine, individuals and society.

Working closely with the Centre’s Executive Team, the successful candidate will develop and undertake an empirical socio-legal research project concerned with the legal consciousness of stakeholders in a health research context, such as in the realm of reproductive medicine, data sharing or clinical trials. You will also contribute to cross-cutting projects involving other members of the Centre.

The work demands close attention to detail, the ability to prioritise, identify and achieve deadlines and use good judgement and initiative. A positive collaborative attitude is also essential.

The successful candidate will have demonstrated success in research, supported by a track record of strong relevant publications. In addition, applicants are invited to explore how their research interests complement the existing strengths of the Executive Team and their respective Schools.

The post is available from 1st September 2018, full-time and fixed-term for 24 months.

Please include your CV and a supporting statement with details of how you meet the knowledge, skills and experience required for this post.

Informal enquiries may be directed to Professor Graeme Laurie (Graeme.Laurie [at] ed.ac.uk).

Job: Research Fellow at University of Edinburgh – Centre for Medical Informatics

5 June 2017

Salary: £32,004 to £38,183
Hours: Full Time
Contract Type: Fixed-Term/Contract
Placed on: 1st June 2017
Closes: 3rd July 2017
Job Ref: 040078

We are seeking a dynamic research fellow to undertake research activities on the Wellcome Trust Seed Award “Patienthood and Participation in the Digital Era”. Responsibilities will include design, data collection, analysis, and publication; assisting with the development and implementation of a programme of public engagement in conjunction with the research; and contributing to new research initiatives arising from the Award, including the development of grant applications for related projects.

Applicants must have a PhD (or near completion) in bioethics or related social science / humanities discipline (or relevant equivalent experience). Excellent project management and organisational skills with the ability to work independently under appropriate supervision is essential.

The post is full time (35 hours per week), available from July 2017 for 12 months and based in The University of Edinburgh’s Usher Institute of Population Health Sciences and Informatics.

Please include your CV and a supporting statement with details of how you meet the knowledge, skills and experience required for this post.

Informal enquiries may be made to Dr Sarah Chan at Sarah.Chan [at] ed.ac.uk

Conference: Health Law and the UK: Where Now After Brexit?

6 December 2016
Thursday 4th May 2017
Birmingham Law School, University of Birmingham

As policy  makers and lawyers grapple with the aftermath of the EU Referendum this conference explores the  implications and  challenges of Brexit for UK Health Law.  Papers will include ‘Brexit: an opportunity to rationalise bioethics governance in the U.K.?; the impact of Brexit for  public health law; “Clinical Trials in the UK: Where Now After Brexit”;  the implications of Brexit for reproductive choice; “Open for Business – Risks to Public Health from International Commerce After Brexit”; “Research Regulation: A leap in the Dark”; privacy health and data protection post Brexit; and “Pharmaceutical regulation: another fine mess they’ve got us into”.

Speakers include:

Professor Emma Cave, Durham Law School

Professor John Coggon, Bristol Law School

Dr Mairead Enright, Birmingham Law School

Professor Graeme Laurie, University of Edinburgh

Dr Samantha Halliday, Leeds Law School

Professor Tamara Hervey, Sheffield Law Schools

Dr Mark Flear, Queens University Belfast Law School

Professor Jean McHale, Centre for Health Law Science and Policy, Birmingham Law School

Professor Jonathan Montgomery, Faculty of Laws UCL

Professor Chris Newdick,  School of Law, University of Reading

Professor Keith Syrett, Cardiff Law School

Dr Mark Taylor, Sheffield Law School

Registration is now open. The full programme is available here.

For further information contact Jean McHale – j.v.mchale [at] bham.ac.uk

Report: The collection, linking and use of data in biomedical research and health care: ethical issues

4 February 2015

The Nuffield Council on Bioethics has published its report on The collection, linking and use of data in biomedical research and health care: ethical issues.

We are generating more data about people’s health and biology, from more sources, than ever before including GP records, hospital notes, laboratory tests, clinical trials, monitoring devices and health apps.

Advances in information technology and data science mean that it is becoming easier, cheaper and more valuable to gather, transfer, link, store and analyse these data. This offers significant opportunities to generate new knowledge, improve medical practice, increase service efficiency and drive innovation.

The Nuffield Council on Bioethics’ report looks at the ethics of data use by considering the relationship between privacy and public interest, and how developments in data science and computing have put significant pressure on conventional approaches to information governance, including the approach of seeking consent or anonymising data for use in research.

More needs to be done to ensure that respect for participants and the protection of their data is at the centre of any initiative, through participation and accountability, backed up by good governance, and criminal penalties for the misuse of data. To marginalise individuals who provide data means risking the trust of current and future generations, exposing people to unacceptable risks, and ultimately missing out on the benefits of research.

The report sets out key ethical principles for the design and governance of data initiatives, and identifies examples of good practice relevant to anyone approaching a data initiative, such as a principal investigator in a research project, lead policy official or commissioner of services.

If you would like to receive a printed copy of the report, please email bioethics@nuffieldbioethics.org (reports are free to order on or before 10 February 2015)

To view it online or for further details go here.

Job: Researcher in law governing population biobanks

18 June 2012

Researcher in Law
University of Oxford – Dept of Public Health, Centre for Health, Law and Emerging Technologies (HeLEX)
Old Road Campus, Oxford
Grade 7: £29,249 – £35,938 p.a.

We are seeking a Researcher in Law to carry out legal research as part of an international, interdisciplinary research project called BioSHARE. The BioSHARE project aims to develop harmonised tools, standards, procedures and policies for linking population biobanks within Europe.

You will identify, collate and critically analyse the laws and regulatory bodies that apply to the processing of personal data in the context of BioSHARE. You must be able to determine how the law applies to the BioSHARE project and explain the legal requirements in an accessible way to other team members as well as presenting your analysis on websites, in reports and through presentations. You will be expected to be an active and enthusiastic member of the HeLEX and BioSHARE teams and play an important role in the development of the activities in both.

You will possess a first degree in Law, or a professional qualification (e.g. as solicitor or barrister) and preferably a further degree in Law. You will have excellent communication skills (both in written and spoken English) and be able to convey complex legal principles to a wide range of people. You will also have excellent legal research skills and a knowledge of information law (data protection and privacy law) in England and Wales, Europe and internationally. Along with the ability to work as part of an interdisciplinary team you will possess excellent analytical, organisational and research skills. You will have experience of taking responsibility for developing and undertaking an independent programme of research or work. You must have a good track record of writing and publishing in peer-reviewed journals.

The post is full-time for 3 years. This position is being re-advertised and previous applicants need not apply.

Closing date for applications is 12 noon on 29 June 2012.
Interviews will be held in the w/c 9 July 2012.

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

Debate: Whose data is it anyway? Medical databases, privacy and trust

8 October 2008

Battle of Ideas 2008, Sunday 2 November, 11.00am until 12.30pm, Lecture Theatre 1, Royal College of Art, Kensington Gore, London SW7 2EU, part of the Battle for Biomedicine strand.
“Traditionally, we trust doctors with confidential information about our health in the knowledge that it’s in our own interests. Similarly, few patients object to the idea that such information may be used in some form for medical research. But what happens when this process is subject to scrutiny? How explicit does our consent have to be? Since the introduction of the Data Protection Act 1998 medical researchers have raised concerns over the increasing barriers they face to accessing patient data. These concerns have heightened amongst some researchers since the passing of the Human Tissue Act 2004 introduced in the wake of the Alder Hey and Bristol Royal Infirmary scandals. When scientific advances are unravelling the secrets of DNA and the decoding of the human genome has opened up substantial new research opportunities. Clinical scientists and epidemiologists argue that the requirements being placed upon them are disproportionate to the use they are making of either datasets or tissues samples and, besides, their work is in the public interest. At the heart of the debate lie key questions over trust and consent and how these can best be resolved.

To complicate things, it is no longer just medical researchers, but also public health bureaucrats who are keen to have access to our data. Quasi-official bodies have been charged with persuading individuals to change their behaviour and lifestyles in connection with all manner of issues such as diet, exercise, smoking and alcohol consumption. Social Marketing – the borrowing of commercial marketing techniques in the pursuit of ‘public goods’ – is in vogue amongst public health officials. Empowered by advanced data collection and computing techniques, armed with the latest epidemiological research, and emboldened by a mission to change unhealthy behaviour, public health officials are keen to target their messages to specific ‘market segments’ in most need of advice.

Are government researchers abusing patients’ trust? Can and should a distinction be made between the use of data for research and public health promotion purposes, or do the benefits of data-sharing outweigh its disadvantages?”

Mark Walport, director, Wellcome Trust; formerly Professor of Medicine, Imperial College London
Professor Ross Anderson, professor of security engineering, University of Cambridge; chair, Foundation for Information Policy Research; author of Security Engineering — A Guide to Building Dependable Distributed Systems
Tim Kelsey, chair, Executive Board, Dr Foster Intelligence, the UK’s leading health and social care informatics organisation; chief executive, Dr Foster Research
Professor Jeffrey Rosen, professor of law, George Washington University; legal affairs editor, The New Republic; author, The Unwanted Gaze
Dr Stuart Derbyshire, senior lecturer, School of Psychology, University of Birmingham; member, IoI Science and Health Forum.

Further details available here.