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Personal Genetic Testing: Challenges and Benefits in and Beyond the Clinic

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UCL Anthropology Department

14 Taviton Street

London

WC1E 6BT

United Kingdom

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Workshop on Personal Genetic Testing: Challenges, Pitfalls, and Benefits in and Beyond the Clinic, 27th June 2017

The rapid growth of the Personal Genetic Testing (PGT) market raises a number of important scientific, ethical, legal and social concerns, including data security, privacy, and identity, as well as issues around the accuracy, utility, and communication of inferences regarding ancestry, biological predispositions, disease vulnerability, and the sharing of personal data with third parties.

At the same time, PGT has great potential value to individuals and healthcare providers. Realizing this potential requires evidence-based standards for translating commercial genetic testing data into actionable medical information, and educating clinicians and the public on what can and cannot be inferred from personal genomes.

Sponsored by the UCL Grand Challenges Initiative, this workshop aims at establishing a highly interdisciplinary, highly engaged UK-based community of researchers and practitioners that are eager to tackle the various challenges associated with personal genetic testing and inform policymakers, clinicians, and companies.

Venue

Archaeology Lecture Theatre, UCL Anthropology Department, 14 Taviton Street, London WC1E 6BT

Agenda [PDF]

09.45. ~ Opening Remarks ~

10.00. Genetics and Identity, Keynote Speech - Adam Rutherford (BBC)

11.00-11.20. ~ Coffee Break ~

11.20. Science of Ancestry Testing, Focus Group - Garrett Hellenthal (UCL), Debbie Kennett (UCL), Turi King (University of Leicester), David Nicholson (Living DNA), Mike Mulligan (AncestryDNA), Mark Thomas (Moderator, UCL)

12.20-13.45. ~ Lunch Break ~
[lunch not provided, see here for some recommended places]

13.45. Ethical Issues in PGT, Panel - "Subversive Bodies: Subversive ethics? life, death and DNA in contemporary Mexico, and a note on forensic microbiomes", Ernesto Schwartz-Marin (Durham University); "Genetic testing- is it a personal decision?", Lorraine Cowley (Newcastle University); "Uncertainty Remains: New challenges when applying genetic testing in disaster settings", Lucy Easthope (Lincoln Law School); Matthias Wienroth (Moderator, Newcastle University)

14.45. Social Science Perspectives on PGT and Identity, Panel - "Genetic genealogy: the trouble with ancestry", Catherine Nash (Queen Mary University); "Justifications and excuses: identity practices and direct-to-consumer genetic testing", Teresa Finlay (Oxford University), Sahra Gibbon (Moderator, UCL)

15.45-16.15. ~ Coffee break ~

16.15. Security and Privacy Challenges in Genomics, Tutorial - Emiliano De Cristofaro (UCL)

17.00. Medical and Research Aspects of PGT, Short Talks - "Genomes for Personalised Medicine", David Bentley (Illumina); "Open Access Medical Genomics", Amy Webster (UCL Cancer Institute and Personal Genom Project); Joyce Harper (UCL, moderator)

18.00-19.30. ~ Reception ~

Contacts and Organization

Mr. Steve Marchant (S.Marchant@cs.ucl.ac.uk)
Dr. Emiliano De Cristofaro (E.DeCristofaro@ucl.ac.uk)
Dr. Sahra Gibbon (S.Gibbon@ucl.ac.uk)

Speakers' Biographies

Dr. David Bentley FMedSci is Vice President and Chief Scientist at Illumina Inc. David graduated with an M.A. in Natural Sciences from Cambridge and a D.Phil from Oxford. During his career he has been a Senior Lecturer at London University; and later the Head of Human Genetics and a founder member of the Board of Management at the Sanger Centre. David has played a leading role in the Human Genome Project and related international consortia to characterise human sequence variation, including The SNP Consortium and the HapMap Project. His long-term interest is the study of human sequence variation and its impact on human health and disease. His current research is focussed on fast, accurate sequencing of human genomes for adoption and benefit in healthcare.

Dr. Lorraine Cowley has an oncology nursing background and is a Principal Genetics Counsellor at the Northern Genetics Service, Newcastle upon Tyne Hospitals NHS Foundation Trust; Associate Clinical Lecturer at the Institute of Genetic Medicine, Newcastle University and Visiting Scholar in PEALS (Policy, Ethics and Life Sciences). Her research interests are around the social implications of genetic testing for cancer susceptibility which was the subject of her PhD undertaken within PEALS.

Dr. Emiliano De Cristofaro is a Senior Lecturer in the Information Security Group at UCL. His research interest include privacy technologies and information security, as well as data-driven analysis of various issues on the web (including censorship, hate speech, fraud). He received a PhD in Networked Systems from University of California, Irvine, and a BSc (summa cum laude) from University of Salerno (Italy). Before joining UCL, he was a research scientist at Xerox PARC.
https://emilianodc.com

Dr. Lucy Easthope is a researcher on the medico-legal aspects of traumatic death with a particular interest in disaster victim identification and human tissue. She also is an active disaster responder. She is a Senior Lecturer at the Lincoln Law School and the Cabinet Office EPC Senior Fellow in mass fatalities planning.

Dr. Teresa Finlay RN, is currently working at the Centre for Health, Law and Emerging Technologies at Oxford (HeLEX) at the University of Oxford. She is responsible for the Waiting Room Project which seeks to involve and engage the public in biobanking using digital medial in clinical waiting rooms. Having completed a doctoral study in the sociology of personal genomics at Cardiff, Teresa is interested in applying perspectives from science and technology studies to study public and professional engagement with genomic data both in potential and actual donors to biobanks and consumers of direct-to-consumer genetic testing. She is also interested in interpretations of public and professional involvement and engagement (PPIE) in medical research and the challenges evident in PPIE. Previously Teresa has enjoyed a varied career including cancer and critical care nursing and lecturing postgraduate healthcare students.
https://www.ndph.ox.ac.uk/team/teresa-finlay

Dr. Garrett Hellenthal is a Sir Henry Dale Fellow at University College London, working on a project to infer aspects of human history using DNA. He has developed statistical software to determine the genetic relatedness among different world-wide groups and identify times in the past when such groups have intermixed due to invasions, migrations and other interactions. This work has illustrated the genetic impacts of known historical migrations, e.g. related to 5th-6th century Anglo-Saxons in England and the 13-14th century Mongol Empire of Genghis Khan, and unearthed new intermixing signals with no clear historical record.
http://www.homepages.ucl.ac.uk/~ucbtgrh/

Dr. Sahra Gibbon is a Reader in Medical Anthropology in the Department of Anthropology at UCL. She has long standing interest in social and cultural aspects of genomics, particularly focused on cancer genetics. She has carried out ethnographic research in clinical and non-clinical settings in the UK, Cuba and Brazil where she has explored the interface between genomics, gender, patient hood, citizenship and public health. She has long standing interest in inter-disciplinary ways of working and developing dialogues with and alongside research communities and publics.
https://www.ucl.ac.uk/anthropology/people/academic-teaching-staff/sahra-gibbon

Ms. Debbie Kennett is an independent genetic genealogist who has been following the growth of the personal genetic testing market since 2007 and has tested with all the major companies. She contributes to Who Do You Think You Are? Magazine and Family Tree Magazine, and is the author of two books for the History Press: DNA and Social Networking and The Surnames Handbook. She is an Honorary Research Associate in the Department of Genetics, Evolution and Environment at University College London. She helps to educate the public about the responsible use of genetic testing through her volunteer work with ISOGG (the International Society of Genetic Genealogy) and the Guild of One-Name Studies.
https://cruwys.blogspot.co.uk

Dr. Turi King read Archaeology and Anthropology at the University of Cambridge before moving into the field of molecular genetics at the University of Leicester. Turi's early research centred around forensics, genetic genealogy/surnames and using DNA, such as the Y chromosome to trace past human migrations. More recently she has moved into ancient DNA research and is probably best known for leading the genetic analysis in the Richard III case.
http://www2.le.ac.uk/departments/genetics/people/king

Mr. Mike Mulligan is a Principal Product Manager with Ancestry based in the Ancestry International office in Dublin. Mike led the launch of Ancestry in Mexico and was also product manager on the launch of AncestryDNA in the UK, Ireland, Canada, Australia and New Zealand. Mike also works as genetic genealogist assisting on family history cases involving DNA analysis.

Prof. Catherine Nash is a feminist cultural geographer in the School of Geography, Queen Mary University of London. Her research focuses on geographies of relatedness and belonging, including the social and political implications of popular and scientific accounts of ancestry and origins in Ireland, the United Kingdom and more widely. Her research has been funded by the ESRC, AHRC, British Academy and the Leverhulme Trust. Her publications include Of Irish Descent: Origin Stories, Genealogy and the Politics of Belonging (2008) and Genetic Geographies: The Trouble with Ancestry (2015).
http://www.catherinenash.website

Mr. David Nicholson is managing director of DNA Worldwide Group which he founded in 2004 with the aim to transform the level of service provided and ensure true quality and care in the DNA testing industry. He has built a wealth of experience in personal DNA testing and launched Living DNA with a team of experts and collaborators from around the world aiming to put DNA in context allowing individuals to explore their DNA in new ways.

Dr. Adam Rutherford is a writer and broadcaster. His books have included Creation, on the origin of life and synthetic biology, and the bestselling A Brief History of Everyone Who Ever Lived. Adam presents BBC Radio 4's weekly programme Inside Science, The Curious Cases of Rutherford and Fry, and many other programmes on radio and television. He has worked on a number of movies, including the Oscar-winning Ex Machina (2015). He read genetics at UCL and did a PhD at the Institute of Child Health on developmental genetics, and is an Honorary Fellow in the Genetics department at UCL. Or something.
https://en.wikipedia.org/wiki/Adam_Rutherford

Dr. Ernesto Schwartz-Marin is a Research Fellow at Durham University his research is characterised by the ethnographic engagement with large bioscientific endeavours in Latin America, such as the Mexican Genome or the Colombian Human Expedition. Since 2011 he has been involved in the creation participatory action research interventions in humanitarian crises via grass-roots DNA databases, and citizen-led science. Some of his recent publications include: ‘Forensic civism: articulating science, DNA and kinship in contemporary Mexico and Colombia’ and ‘Pure Corpses, Dangerous Citizens: transgressing the boundaries between mourners and experts in the search for the disappeared in Mexico’. He previously directed the ESRC transformative project ‘Citizen Led Forensics’ and is currently Co-directing the RCUK-CONACYT project ‘Mobile Solutions to the Mexican Kidnapping Epidemic’.
https://www.dur.ac.uk/research/directory/staff/?id=11693

Prof. Mark Thomas is Professor of Evolutionary Genetics at University College London and works mainly on biological and cultural aspects of human evolution. He uses computer simulation and statistical modelling to make inferences from genetic data – including ancient DNA – and archaeological information, on processes such as past migrations and dispersals, natural selection – particularly in response to changes in diet and infectious disease loads – and how demography shapes cultural evolution. He has also commented extensively in public and academic forums on the scientific validity of claims made by genetic ancestry testing companies.
https://www.ucl.ac.uk/mace-lab/people/mark

Dr. Amy Webster is an epigenetics enthusiast in the UCL Cancer Institute and the UK Personal Genome Project. She researches epigenetic biomarkers which are associated with human disease and therapy response, with a particular focus on autoimmune disorders and Cancer. She chairs the UCL Personalised Medicine Domain Early Careers Network, which brings together internationally renowned speakers to speak at conferences and training workshops for the benefit of personalised medicine researchers across UCL. She completed her undergraduate and PhD at The University of Manchester, where she also founded the ‘Northern Epigenomics Club’.

Dr. Matthias Wienroth is researcher and knowledge broker at the interface of science and technology studies, empirical ethics, and governance studies. His research attends to cross-boundary knowledge production and organisation in the context of science and technology as social practice. Integral to Matthias' work is collaboration and knowledge exchange with science practitioners, policy-makers and wider publics.



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WC1E 6BT

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