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

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

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

Tuesday 5^th 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 21^st February, 1-2pm, Moot Court, Somerset House
Professor Ruth Chadwick, Distinguished Research Professor, University of Cardiff
“Risk and Responsibility: From Genome to Epigene”

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

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

Thursday 14^th 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.

Radio: organ donation and confidentiality

Inside the Ethics Committee, BBC Radio 4, Thursday 21 July 2011, 09.00-09.45 or 21.00-21.45, available after first broadcast via the iPlayer

From the programme’s page:

What happens when a proposed medical treatment clashes head on with a patient’s cultural values?

Moha has kidney failure. He’s on dialysis to replace his lost kidney function, and on the waiting list for a transplant. But his chances of receiving a kidney from a deceased donor are slim.

The donor pool is primarily Caucasian, and given that Moha is African and has a rare blood type, it’s unlikely a tissue matched kidney will come up.

His nephew back in his country of origin offers to donate one of his kidneys. But Moha has a secret that only he and his medical team know about.

As his nephew has offered to donate a kidney, the team feel that he has a right to know. Should Moha be forced to tell?

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

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

Conference: BioPrediction

An International Conference at the American Association for Advancement of Science and the Carnegie Institution

Washington D.C., 8-9 May 2010

Organised by Dr Ilina Singh (LSE) and Professor Walter Sinnott-Armstrong (Duke University)

“Can biological information aid predictions of misconduct? That is the question of BioPrediction. The idea is not to replace psychological and sociological studies but to supplement them with new information from structural and functional brain scans, genetics, hormone analyses, and other biological sources. Contemporary statistical engines can use all of this information together to generate predictions of future delinquency and crime. In educational and other social contexts, biomarkers might aid in identification of ‘high risk’ children – perhaps at a pre-symptomatic stage – who will benefit from early interventions. In forensic contexts, biomarkers could inform predictions of criminal behaviour – including violence and sex crimes – to be taken into account in sentencing, parole, probation, and detention decisions. Biomarkers could also be used in addiction treatment programs to guide treatment and predict relapse, and in psychiatric contexts to predict risk of harm to self and others as prerequisites for release from a mental institution. These possibilities clearly raise a host of ethical and legal issues, including concerns about privacy, intervention and due process. All of this will be discussed by leading clinicians, social scientists, neuroscientists, lawyers, and ethicists at a workshop on May 8-9 in Washington, D.C. Revised papers from this workshop will be published in a collection.”

Registration is now open.

Conference: data sharing, confidentiality and genomics

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.

PhD studentship: Centre for Computing and Social Responsibility

Faculty of Technology, De Montfort University, Leicester.

The Centre for Computing and Social Responsibility is delighted to announce that a full-funded sponsored PhD studentship is available for undertaking research into the ethical implications of information and communication technologies in personal health monitoring.

Further details here.

Please note that the closing date is noon on Friday 11th December 2009.

News: GMC announces new guidance on Confidentiality

“New guidance on doctors’ obligations to maintain patient confidentiality is launched today. Confidentiality (2009) sets out the principles of confidentiality and respect for patients’ privacy that doctors are expected to understand and follow.

The new guidance comes into effect on 12 October 2009 when it will replace Confidentiality: Protecting and providing information (2004) and the accompanying Frequently Asked Questions.”

Public debate: Registering concern: should anonymous gamete donors be encouraged to reregister and if so how?

A debate organised by the Progress Educational Trust In partnership with the Donor Conception Network and the National Gamete Donation Trust

6.30pm-8pm, Thursday 11 June 2009

Palace of Westminster, London SW1A 0AA

The entitlement to anonymity of UK sperm and egg donors ended in 2005, a development that has been welcomed by those who spent long years campaigning for it, and criticised by those who blame it for a current shortage of donor sperm and eggs. 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. Whether and how to encourage donors to reregister in this way is a difficult question. Some donor-conceived individuals insist that they are entitled to know their genetic provenance, not just for practical reasons of medical history but also to address profound difficulties of psychology and identity. Others counter that revealing the identities of anonymous donors is an unconscionable breach of the terms on which they donated in good faith, and that at the very least, the donor’s consent must be a prerequisite for identifying them. But how does one solicit consent from a group of people whose identity is, by definition, unknown?

Speakers include:

DAVID GOLLANCZ Lawyer and donor-conceived individual

DANIELLE HAMM Policy Manager at the Human Fertilisation and Embryology Authority

DR JENNIFER SPEIRS Honorary Research Fellow at the University of Edinburgh Followed by questions from the floor Chair

ALLAN PACEY Senior Lecturer in Andrology at the University of Sheffield

Map. This event is FREE to attend, but advance booking is required. If you should like to attend, please RSVP to sstarr@progress.org.uk

Radio: genetic confidentiality on Woman’s Hour

On today’s Woman’s Hour, Jenni Murray interviewed Dr. Vivienne Nathanson, Head of Science and Ethics at the BMA, and Professor Gareth Evans who recently published an article in The Lancet Oncology calling for doctors to be allowed to inform family members of women who test positive for mutations which predispose them to breast cancer.