Projects

Faithful judgements in Reflection and Discernment, 2017-2018

Funding: ESRC Societal and Economic Impact Acceleration Fund, £7,760 to PEALS
Principal Investigator: Jackie Leach Scully and Robert Song
Read more about this project.

Faithful judgements in Policy and Practice, 2015-16

Funding: ESRC Societal and Economic Impact Acceleration Fund, £8,432 to PEALS
Principal Investigator: Jackie Leach Scully and Robert Song

A socio-ethical investigation of the values and experiences of women volunteering to provide eggs for mitochondrial research under a scheme in which money is offered to egg providers, 2013-2015

Funding: The Wellcome Trust, £199,905 to PEALS
Principal Investigator: Erica Haimes
Read more about this project.

Donor conception, secrecy, and the voice of the UK patients, 2012

Funding: Sociology of Health and Illness Foundation Mildred Blaxter post-doctoral fellowship, £39,100
Recipient: Ilke Turkmendag

RD Connect, 2012-2018

Funding: EU, £180,000 to PEALS
Work Package Leader: Simon Woods
Project Leaders: Hanns Lochmüller and Kate Bushby
Read more about this project.

Faithful judgements: the role of religion in lay people’s ethical evaluations of new reproductive and genetic technologies, 2011-2013

Funding: ESRC, £254,000 to PEALS
Principal Investigator: Jackie Leach Scully
Read more about this project.

Embryo and egg donation for research in Canada, 2011-2013

Funding: Canadian Institute of Health Research, $CAN 453,891
Co-Investigator: Erica Haimes, based on replication of her Wellcome Trust grant, with F Baylis, A Leader and C McLeod

Ethics of family in health and social care research consortium, 2011

PEALS is a partner in this research consortium, launched in 2011.
Read more about this project.

Embryo donation for stem cell research in Portugal, 2010-2013

Funding: Portuguese Funding Council, €83,712
Principal Investigator: S Silva with H Machado
Consultant: Erica Haimes

The genetics of autistic spectrum disorders: social and ethical implications, 2010-2011

Funding: Northumberland Tyne and Wear Foundation Trust, Flexibility and Sustainability Fund, £30,000
Principal Investigator Dr Jeremy Parr, Institute of Neurosciences
Co-Investigator Dr Janice McLaughlin

Interdisciplinary approaches to the uses of reproductive tissue in stem cell science (IDARTSS), 2009-2012

Funding: William Leech Charitable Trust, £200,000 to PEALS
Principal Investigator: Erica Haimes
Read more about this project.

Parenthood and nonparenthood in an age of reproductive technologies, 2009-2011

Funding: British Academy, £6,900
Principal Investigator: Stephanie Lawler
Co-investigator: Jackie Leach Scully

Parents, Professionals and Disabled Babies: Identifying Enabling Care, 2009

Funding: ESRC
Principal Investigator: Dan Goodley (University of Sheffield)
Co-Investigator Janice McLaughlin
Read more about this project.

Kinship and genetic journeys: A study of the experiences of families who are referred to paediatric genetics, 2008 – 2012

Funding: ESRC, £395,000 to PEALS Principal Investigator: Janice McLaughlin Co-Investigators: Erica Haimes and Dr Michael Wright, Northern Genetics Service
Read more about this project.

Women’s experiences of an IVF egg sharing scheme for SCNT research, 2008-2011

Funding: Medical Research Council, £296,000 to PEALS
Principal Investigator: Erica Haimes
Read more about this project.

Genetics and Kinship: finding morality at their intersection. Living with the aftermath of genetic testing for Lynch Syndrome. What are the intersections between genetics and kinship? 2007-2011

Funding: Cancer Research UK Nursing Fellowship, £160,000
Academic Supervisor and grant holder: Dr Janice McLaughlin
Read more about this project.

TREAT-NMD Network, 2007-2011

Funding: EU Network of Excellence, £200,000 to PEALS
Work Package Leader: Simon Woods
Project Leaders: Kate Bushby and Volker Straub
Read more about this project.

Potential embryo donors’ views on embryonic stem cell research and therapies, 2003-2012

Funding: Wellcome Trust, £210,944 to PEALS
Principal Investigator: Erica Haimes
Read more about this project.

Antenatal Screening Website Resource (AnSWeR), 2003-2005

Funding: Wellcome Trust, £119,998
Principal Investigator: Tom Shakespeare
Read more about this project.

Parent and staff reactions to feticide prior to termination of pregnancy for fetal anomaly, 2004

Funding: Newcastle Health Care Charity, £3,552 to PEALS
Principal Investigators: Stephen Robson and Judith Rankin
Consultant: Erica Haimes

IVF and stem cell research: networking collaboration, 2004

Funding: Medical Research Council
Principal Investigator: Professor Peter Braude, Guy’s, Kings and St. Thomas’ School of Medicine

Publications

Our latest publications in this area include:

Scully JL. Disability and the challenge of genomics. In: Gibbon, S; Prainsack, B; Hilgartner, S; Lamoreaux, J, ed. Routledge Handbook of Genomics, Health and Society. Routledge, 2018. In Press.

Scully JL. Choice, chance and acceptance. In: Parens,E; Johnston,J, ed. Gene editing and human flourishing. Oxford: Oxford University Press, 2017. In Press.

Scully JL. A Mitochondrial Story: Mitochondrial Replacement, Identity and Narrative. Bioethics 2016, 31(1), 37-45.

Scully JL, Banks S, Song R, Haq J. Experiences of faith group members using new reproductive and genetic technologies: A qualitative interview study. Human Fertility 2016, 20(1), 22-29.

Hansson MG, Lochmuller H, Riess O, Schaefer F, Orth M, Rubinstein Y, Molster C, Dawkins H, Taruscio D, Posada M, Woods S. The risk of re-identification versus the need to identify individuals in rare disease research. European Journal of Human Genetics 2016, 24(11), 1553-1558.

Haimes, E. & Taylor, K. (2015) Rendered invisible? The absent presence of egg providers in U.K. debates on the acceptability of research and therapy for mitochondrial disease, Monash Bioethics Review, 33: 360. doi:10.1007/s40592-015-0046-7

Mascalzoni D, Dove E, Rubinstein Y, Dawkins H, Kole A, McCormack P, Woods S, Riess O, Schaefer F, Lochmüller H, Knoppers B, Hansson M. International Charter of principles for sharing bio-specimens and data. European Journal of Human Genetics 2015, 23(6), 721-728.

Haimes E, Taylor K. What is the role of reduced IVF fees in persuading women to volunteer to provide eggs for research? Insights from IVF patients volunteering to a UK 'egg sharing for research' scheme. Human Fertility 2014, 16(4), 246-251.

Haimes E. Juggling on a rollercoaster? Gains, loss and uncertainties in IVF patients' accounts of volunteering for a U.K. 'egg sharing for research' scheme. Social Science and Medicine 2013, 86, 45-51

Haimes, E., Taylor, K. and Turkmendag, I. (2012) ‘Eggs, ethics and exploitation? Investigating women’s experiences of an egg sharing scheme’, Sociology of Health and Illness, 34(8):1199-1214

Scully J, Haimes E, Mitzkat A, Porz R, Rehmann-Sutter C. Donating embryos to stem cell research : the “problem” of gratitude. Journal of Bioethical Inquiry 2012

Turkmendag I. The Donor-conceived Child's `Right to Personal Identity': The Public Debate on Donor Anonymity in the United Kingdom. Journal of Law and Society 2012, 39(1)

Aartsma-Rus A, Cosigned by, Furlong P, Vroom E, van Ommen GJ, Niks E, Straathof C, Verschuuren J, Ferlini A, Hagger L, Heslop E, Karcagi V, Kirschner J, McCormack P, Moeschen P, Muntoni F, Ouillade MC, Rahbeck J, Rehmann-Sutter C, Rouault F, Sejersen T, Woods S. The risks of therapeutic misconception and individual patient (n = 1) “trials” in rare diseases such as Duchenne dystrophy. Neuromuscular Disorders 2011, 21(1), 13-15.

Haimes E, Taylor K. Researching the Relationships between Tissue Providers, Clinicians, and Stem Cell Scientists. Cell Stem Cell 2011, 8(6), 613-615

McCormack P, Woods S, Hagger L. The therapeutic misconception, decision making and informed consent: the ethics of trial participation for neuromuscular disorders. Neuromuscular Disorders 2011, 22(2), 191-192.

McLaughlin J. Where's the Harm? Challenging Bioethical Support of Prenatal Selection for Sexual Orientation. In: Scully, JS; Baldwin-Ragaven, LE; Fitzpatrick, P, ed. Feminist Bioethics: At the Centre, On the Margins. Baltimore, MD: The John Hopkins University Press, 2010, pp.174-189.

Woods S, Taylor K. Ethical and governance challenges in human fetal tissue research. Clinical Ethics 2008, 3(1), 14-19

Woods S. Stem Cell Stories: from bedside to bench. Journal of Medical Ethics 2008, 34(12), 845-848.