PROGAR has been actively engaged in the following key areas:
- Contributing to government and associated consultations
- Contributing to consultations initiated by the statutory UK regulatory body, the Human Fertilisation and Embryology Authority
- Promotion of good practice in information, support and counselling for people undertaking a fertility procedure, individuals conceived as a result of fertility procedures and third parties (donors and surrogates)
- Campaigning to end the legal protection of donor anonymity in the UK.
In addition, individual members of PROGAR have contributed to practice and policy development in other jurisdictions, including Australia, Canada, Hong Kong and New Zealand.
Representatives of the Department of Health and Social Care attend PROGAR meetings as observers. PROGAR is also a member of the HFEA Professional Stakeholders Group and is represented on the National Gamete Donation Trust Advisory Council.
At the beginning of 2007, in the light of demands on members’ time and resources, PROGAR agreed to refocus its concern specifically on issues relating to family building using assisted conception where there is genetic difference between parent(s) and children and all forms of surrogacy. PROGAR continues to work with and support BICA in the task of supporting the need for care for people with fertility difficulties.
Chair: Dr Marilyn Crawshaw
- Julia Feast, Birth Registration Campaign and Julia Feast Consultancy, London
- Jennifer Hunt, independent member
- David Jones, CFAB (and link person for BASW)
- Olivia Montuschi, Donor Conception Network
- Dr Jennifer Speirs, BASW, Edinburgh
- Helen Thomson, independent member
- Emeritus Professor Olga van den Akker, Middlesex University
- Susie Blamire, Cafcass
- Anne Chien, (corresponding member)
- Gerry McCluskey, (corresponding member)
- Ann Curley, British Infertility Counselling Association representative
- Ann Haigh, NAGALRO - we are sad to announce the death of Ann Haigh on 16th October 2022
Marilyn Crawshaw, PhD, MA CQSW DipApplSocStud, BSc(Soc)
Marilyn is the Chair of PROGAR. Formerly Senior Lecturer in Social Work, Marilyn is now an Honorary Fellow at the University of York. As well as practising as a social worker in this field for many years (including fertility counselling), she has written and researched into related areas including the experiences of donor conception, surrogacy, cancer-related fertility and adoption.
Marilyn was the national Adviser to UK DonorLink, the Dept of Health funded Voluntary information Exchange and Contact Register for adults genetically related through donor conception pre 1991 from its inception in 2004 to its transfer to the Donor Conceived Register in April 2013. A former Social and Ethical Inspector and External Adviser to the HFEA, Marilyn was part of an advisory group that helped the HFEA shape its professional support and intermediary services for donor conceived adults approaching the HFEA to exercise their statutory right to information about their donor(s). A founder member of the British Infertility Counselling Association (BICA), Marilyn is editor of the BICA Practice Guide series. Marilyn also contributes to the Preparation for Parenthood workshops run by the peer support organisation, Donor Conception Network.
Recent Selected publications regarding donor conception and surrogacy
Marilyn Crawshaw and Ken Daniels 'Revisiting the use of ‘counselling’ as a means of preparing prospective parents to meet the emerging psychosocial needs of families that have used gamete donation' Families, Relationships and Societies in press
Frith, L., Blyth, E., Crawshaw, M. and van den Akker, O. (2017) Secrets and disclosure in donor conception Sociology of Health and Illness DOI:10.1111/1467-9566.12633 On-line link to read only version - - http://rdcu.be/FFZM
Frith, L., Blyth, E., Crawshaw, M. and van den Akker, O. (2017) Searching for 'relations' using a DNA linking register by adults conceived following sperm donation BioSocieties (0), 1-20 DOI 10.1057/s41292-017-0063-2 OR on-line link to read only version - http://rdcu.be/uJhg
Crawshaw, M. (2017) Direct-to-consumer DNA testing – the fallout for individuals and their families unexpectedly learning of their donor conception origins Human Fertility DOI: http://dx.doi.org/10.1080/14647273.2017.1339127
Blyth, Eric, Crawshaw, Marilyn., Rodino, Iolanda and Thorn, Petra (2017) Donor-conceived people do benefit from being told about their conception BioNews Commentary 902 http://www.bionews.org.uk/page_845387.asp
Crawshaw, M. and 38 others (2017) Disclosure and donor-conceived children Human Reproduction doi:10.1093/humrep/dex107
E.D. Blyth, M. Crawshaw, L. Frith, O. van den Akker (2017) Gamete donors’ motivations for, expectations and experiences of registration with a voluntary donor linking register Human Fertility Vol 20 No 4: 268-278 http://dx.doi.org/10.1080/14647273.2017.1292005
Marilyn Crawshaw, Eric Blyth and Julia Feast (2017) Can the UK’s birth registration system better serve the interests of those born following collaborative assisted reproduction? Reproductive Biomedicine & Society Online 4 (2017) pp. 1-4
Marilyn Crawshaw ‘What social workers need to know about surrogacy, 14th December 2016 - https://www.theguardian.com/social-care-network/social-life-blog/2016/dec/14/what-social-workers-need-to-know-about-surrogacy.
M. Crawshaw, L. Frith, O. van den Akker and E.D. Blyth (2016) Voluntary DNA-based information exchange and contact services following donor conception: an analysis of service users’ needs New Genetics and Society DOI: 10.1080/14636778.2016.1253462.
Eric Blyth and Marilyn Crawshaw Retrospective removal of donor anonymity: respectful, fair, grateful and moral? An evidence-based argument 21 March 2016 BioNews 844 http://www.bionews.org.uk/page_630716.asp
Marilyn Crawshaw, Ken Daniels, Damian Adams, Kate Bourne, J.A.P. van Hooff, Wendy Kramer, Lauri Pasch, Petra Thorn (2015) Emerging models for facilitating contact between people genetically related through donor conception: a preliminary analysis and discussion Reproductive Biomedicine & Society Online 1 (2015) pp.71-80 DOI: 10.1016/j.rbms.2015.10.001
Eric Blyth, Marilyn Crawshaw and Patricia Fronek (2015) Reform of UK surrogacy laws: the need for evidence BioNews Commentary 813 http://www.bionews.org.uk/page.asp?obj_id=553051&PPID=553260&sid=141
Wendy Norton, Marilyn Crawshaw, Nicky Hudson, Lorraine Culley, Caroline Law (2015) A survey of UK fertility clinics' approach to surrogacy arrangements Reproductive Biomedicine Online 31, 327-338 ; DOI:10.1016/j.rbmo.2015.06.009
Pim M.W. Janssens, Petra Thorn, Jose A. Castilla, Lucy Frith, Marilyn Crawshaw, Monique Mochtar, Lars Bjorndahl, Ulrik Kvist, Jackson Kirkman-Brown (2015) 'Evolving minimum standards in responsible international sperm donor offspring quota’ RBM Online 30, 6, pp 568–580 DOI: http://dx.doi.org/10.1016/j.rbmo.2015.01.018
Blyth E. and Crawshaw M (2015) Breaches of the HFEA's donor 'ten family' limit - who should be told what? BioNews 786 http://www.bionews.org.uk/page.asp?obj_id=485876&PPID=486104&sid=228
van den Akker OBA, Crawshaw MA, Blyth ED, and Frith LJ (2015) Expectations and experiences of gamete donors and donor-conceived adults searching for genetic relatives using DNA linking through a voluntary register Human Reproduction Vol 1, pp 111-121 https://doi.org/10.1093/humrep/deu289
Crawshaw, Marilyn and Wallbank J (2014) Is the birth registration system fit for purpose? The rights of donor conceived adults to access information about biological as well as legal parentage. Family Law August Vol 44 pp1069-1216
Blyth, E., Crawshaw M. And van den Akker O. (2014) What are the best interests of the child in international surrogacy? BioNews Commentary 742 http://www.bionews.org.uk/page_397263.asp?dinfo=tRjpJLtDLNfjKygPYuuCsxXm&PPID=397105
Fronek P. And Crawshaw M. (2014) The ‘new’ family as an emerging norm: A commentary on the position of social work in assisted reproduction British Journal of Social Work 45(2): 737-746. doi:10.1093/bjsw/bct198
Crawshaw M. and Montuschi O. (2014) It ‘did what it said on the tin’ - Participants’ Views of the content and process of Donor Conception Parenthood Preparation Workshops Human Fertility 17, 1, 11-20
Wilde, R., McTavish, A. and Crawshaw, M. (2014) Family Building using Donated Gametes and Embryos in the UK: Recommendations for Policy and Practice on behalf of the British Fertility Society and the British Infertility Counselling Association and in collaboration with the Association of Clinical Embryologists and the Royal College of Nurses Fertility Nurses Forum Human Fertility 17, 1, 1-10 DOI: 10.3109/14647273.2013.862041
Crawshaw M and Montuschi O (2013) ‘Participants' Views of Attending Parenthood Preparation Workshops for those contemplating donor conception parenthood’ Journal of Infant and Reproductive Psychology DOI:10.1080/02646838.2012.748886
Crawshaw M., Gunter C, Tidy C. and Atherton F. (2013) Working with previously anonymous gamete donors and donor-conceived adults: recent practice experiences of running the DNA-based voluntary information exchange and contact register, UK DonorLink Human Fertility Invited for Special edition 16, 1, pp 26-30
Crawshaw M., Blyth E. and van den Akker O. (2012) ‘The changing profile of surrogacy in the UK – Implications for national and international policy and practice’ Journal of Social Welfare and Family Law vol 34:3 265-275
Blyth E, Crawshaw M, Frith L and Jones C (2012) ‘Donor-conceived people’s views and experiences of their genetic origins: a critical analysis of the research evidence’ Journal of Law and Medicine 19(4) June 769-789 Invited paper for special edition
Crawshaw M and Dally J (2012) ‘Producing sperm, egg and embryo donors’ pen portraits and other personal information for later use by donor offspring: an exploratory study of professional practices’ Human Fertility 15(2); 82-88
Crawshaw M, Purewal S, and van den Akker O (2012) ‘Working at the margins: The views and experiences of court social workers on Parental Orders’ work in surrogacy arrangements’ British Journal of Social Work doi: 10.1093/bjsw/bcs045
Purewal S, Crawshaw M and van den Akker O (2012) ‘Completing the surrogate motherhood process: The experiences of Parental Order Reporters’ Human Fertility 15(2); 94-99
Crawshaw M and Adams D (2011) ‘Rising from the Ashes: Two countries, two reviews of donor conception services - Australia leads the way’ BioNews Commentary http://www.bionews.org.uk/page_89766.asp
Crawshaw M and Balen R (eds) (2010) Adopting after Infertility – Messages from Practice, Research and Personal Experience London, Jessica Kingsley Publishers
Crawshaw M and Marshall L (2008) ‘Practice experiences of running UK DonorLink, a voluntary information exchange and contact register for adults related through donor conception’ Human Fertility Vol 11 No 4 pp 231-237
Crawshaw M. (2008) ‘Prospective parents’ intentions regarding disclosure following the removal of donor anonymity’ Human Fertility Vol 11(2) pp 95-100
Blyth E., Frith L. and Crawshaw M. (2008) 'Ethical objections to sex selection for non-medical reasons’ Reproductive BioMedicine Online Vol 16 Suppl 1 pp41-45
Crawshaw M.A., Blyth E.D. and Daniels K.D. (2007) ‘Past semen donors’ views about the use of a voluntary contact register’ Reproductive BioMedicine Online Vol 14 No 4 pp411-417
Wincott E and Crawshaw M.A. (2006) ‘From a social issue to policy: social work's advocacy for the rights of donor conceived people to genetic origins information in the UK’ Social Work in Health Care Vol 43 no 2/3 p53-72
Balen R and Crawshaw M (eds)(2006) Sexuality and Fertility in Ill Health and Disability: From early adolescence to adulthood London, Jessica Kingsley
Julia Feast OBE, MA, AASW, CQSW
Julia Feast OBE, is an Independent Consultant, specializing in the life-long issues of being adopted, in care and donor-conceived. In the past she has worked as the Policy, Research and Development Consultant for CoramBAAF and BAAF, and managed the post-adoption and care counselling research project, The Children’s Society, worked as a local authority social worker and team manager, and also as a children’s guardian and reporting officer. She is an experienced social worker, trainer and researcher. She has particular interest in the identity and information rights and needs of adopted people, adult care leavers and donor conceived people. She is a member of the Birth Registration Campaign Group and the Access to Care Records Campaign Group as well as the South East Post Adoption Network. Julia has been a member of PROGAR for 20 years
Feast J & Jordon L, (2014) Access to Information for Adult Care Leavers – A guide for social workers and access to records officers. London: Coram BAAF.
Feast J, Grant, M, Rushton, A & Simmonds, J (2013) Adversity, Adoption and Afterwards - A mid-life follow-up study of women adopted from Hong Kong: London, CoramBAAF
Goddard J, Feast J & Kirton D (2005) A Childhood on Paper: Accessing the Child-care Files of Former Looked After Children in the UK. University of Bradford.
Triseliotis J, Feast J & Kyle F (2005) The Adoption Triangle Revisited: A Study of Adoption, Search and Reunion Experiences. London: BAAF.
Feast J & Hundleby M (2005) Directory of Intermediary Support Services in England and Wales for Birth Relatives. London: BAAF.
Feast J & Philpot T (2003) Searching Questions – Identity Origins and Adoption. London: BAAF.
Trinder L, Feast J & Howe D (2003) The Adoption Reunion Handbook. Chichester: Wiley.
Howe D & Feast J (2000) Adoption, Search and Reunion: The Long Term Experience of Adopted Adults. London: The Children’s Society (reprinted 2003, London: BAAF)
Feast J, Seabrook S, Marwood M & Webb E (1994) Preparing for Reunion. London: The Children’s Society. (Revised edn 1998)
Articles and Chapters
Kirton D, Feast J & Goddard J (2011). The use of discretion in a ‘Cinderella’ service: Data protection and access to child-care files for post-care adults. British Journal of Social Work 41(5): 912-930.
Feast J, Kyle F & Triseliotis J (2011) Adoptive fathers’ experience of search and reunion. Adoption and Fostering Journal 35(1): 57-64.
Feast J (2010) Access to information, progress and perils. Adoption and Fostering Journal 34(3) 74-79.
Feast J (2010) ‘Infertility and adoption: The search for birth parents and the impact on adult family relationships’, Chapter 12. In Crawshaw M and Balen R (eds) Adopting after Infertility – Messages from Practice, Research and Personal Experience, London: Jessica Kingsley.
Feast J (2009) Identity and continuity: adults’ access to and need for information about their history and identity’, chapter 23 in Child Placement Handbook. London: BAAF.
Feast J (2009) Birth registration - A time of change. ChildRight Journal April: 21-25.
Feast J (2003) Using and not losing the messages from the adoption experience for donor-assisted conception. Human Fertility 6(1): 41-45.
Feast J (2003) Donor-assisted conception: What can we learn from adoption?’ Chapter 5 in Singer D & Hunter M (eds) Assisted Human Reproduction: Psychological and Ethical Dilemmas London: WURR.
Feast J &Howe D (2003) Open adoption records, the human rights of adopted people and discrimination: the case of Odievre v France. European Journal of Social Work 7(1): 25-42.
Jennifer Hunt DASS, CQSW, SAMBICA
Jennie is the Senior Infertility Counsellor at IVF Hammersmith, London. She is a founder member of the British Infertility Counselling Association (BICA) and was the first chairperson
She is currently a member of the Accreditation Board for Infertility Counselling, Co-‐chair of the BICA Training Group and a member of the BICA Advisory Group.
Jennie is also a member of the Clinical Ethics Committee, Imperial College NHS Trust. She is an Honorary Fellow of the British Fertility Society and an Honorary Member of BICA.
Previous activities and responsibilities have included:
- Member of the King's Fund Working Party on Infertility Counselling, an Inspector for the Human Fertilisation and Embryology Authority (HFEA);
- Board member of the HFEA also serving on a number of sub-‐committees including Ethics and Law, Information Management, Audit, Licensing, Compliance, Gamete and Donation Review and Code of Practice;
- Committee member of PROGRESS, campaigning for improved public awareness of the biomedical sciences and the dissemination of accurate information;
- BICA representative on the National Gamete Donation Trust Advisory Group, a national government-‐funded charity set up to raise awareness of and seek ways to alleviate the national shortage of sperm, egg and embryo donors in the UK;
- Member of the Working Party on Training for Infertility Counselling and the BICA/BFS Steering Group on Training for Infertility Counselling;
- Member of the Advisory Group to UK DonorLink, the UK Voluntary Contact Register for donor-‐conceived people and donors;
- Counselling representative on the British Fertility Society Executive Committee;
- Chair of British Infertility Counselling Association HFEA Register Counselling Project Steering Group. Work of this group resulted in the report ‘Opening the Record’ (2004).
- Chair of the Guidance on Good Practice in Infertility Counselling Group
Hunt, J. (2013) Cross border treatment for infertility: the counselling perspective in the UK. Human Fertility 16(1):64-‐7.
British Infertility Counselling Association (2006) Guidelines for Good Practice. BICA Publications. (Revised and updated 2012).
British Infertility Counselling Association (2004) ‘Opening the Record’: Planning the Provision of Counselling to People Applying for information from the HFEA Register. BICA Publications.
Afnan, M. and Hunt, J. (2003) Sex selection: The response of the British Fertility Society to the Human Fertilisation and Embryology Authority consultation document. Human Fertility 6(1): 3-‐5.
Hunt, J. and Afnan, M. (2003) Sex selection: Choice and responsibility in human reproduction. Response of the British Fertility Society to the public consultation document. Human Fertility 6(1): 6–8.
Hunt, J. and Fleming R. (2002) Department of health donor information consultation: Providing information about gamete or embryo donors. Human Fertility 5(3): 97–98. 3
Olivia is a counsellor, teacher and parenting consultant. She is currently working as Practice Consultant for Donor Conception Network. She is a founding member of the DC Network and mother to two donor conceived adults. Olivia has written extensively in the field of parenting generally and in particular about the challenges for parents in raising children conceived with the help of a donor.
Olivia has been a member of PROGAR since 2000.
Telling and Talking - four booklets for parents of donor conceived children at different developmental stages
Donor Conception Network April 2006
Mixed Blessings: building a family with and without donor help
Donor Conception Network January 2012
Jennifer Speirs Cert Medical Social Work, Diploma Social Studies, MA, MSc, PhD
Jennifer Speirs is registered as a social worker with the SSSC and is a research associate of the University of Edinburgh’s Centre for Research on Families and Relationships: http://www.crfr.ac.uk/
She received a doctorate in 2008 for her thesis ‘Secretly connected? Anonymous semen donation, genetics and meanings of kinship’: https://www.era.lib.ed.ac.uk/handle/1842/2649
Her research explored within a social anthropology framework the meanings of kinship and the significance of genetics to men who had donated semen anonymously twenty to forty years previously. Her research project emerged from her longstanding social work experience in hospitals, local authorities and NGOs and her particular knowledge and practice wisdom in origins issues, especially in the areas of adoption, fostering, infertility, health-related social work and the life-long issues for adults brought up apart from their birth families.
Jennifer was a founder member of Progar, Honorary Treasurer of the British Infertility Counselling Association from 2001-2004, counselling representative on the British Fertility Society’s executive committee 2004-2010, BASW representative on the board of Children in Scotland 1992 to 1996 and 1998 to 2000, and a Clinic Inspector for the Human Fertilisation and Embryology Authority 1991-2006. She is currently based at the Centre for Research on Families and Relationships at the University of Edinburgh: J.M.Speirs@ed.ac.uk
Jennifer’s work pro bono includes intermediary work for Norcap - Adults Affected by Adoption (2008-2013) and membership of the Church of Scotland’s Society Religion and Technology Committee’s Kinship Bonds Working Party: https://www.youtube.com/watch?v=mkOA61d5zTk
REFEREED PUBLICATIONS (selection)
Speirs, J. (forthcoming) ‘What adoption law suggests about donor anonymity policies: a UK perspective,’ in Trudo Lemmens, Andrew Flavelle Martin, Cheryl Milne, and Ian B. Lee (eds), Regulating Creation: The Law, Ethics, and Policy of Assisted Human Reproduction, University of Toronto Press.
Speirs J. (2016) ‘Eddies of distrust: ‘False’ birth certificates and the destabilisation of relationships’ in Ystanes, M. and Broch-Due, V. (eds), Intimacy, Trust, and the Social: Tensed Relations, New York: Berghahn Books.
Speirs, J. (2013) 'Anonymous Semen Donation: Medical Treatment or Medical Kinship?' Cargo – Journal for Cultural and Social Anthropology Cargo 1, 2 / 2011 – Medical
Anthropology in Central East Europe (Special Issue) vol 8, no. 1-2, pp. 73-90 available at: http://www.casaonline.cz/publikace/cargo-journal-for-social-anthropology/
Speirs, Jennifer (2012) ‘Secretly connected? Perceptions about anonymous semen donation and genetic fatherhood’ CRFR Briefing 63, Centre for Research on Families and Relationships, http://www.crfr.ac.uk/reports/rb%2063%20-%20web.pdf
Speirs, J.M. (2012) ‘Semen donors’ curiosity about donor offspring and the barriers to their knowing’, Human Fertility, vol. 15, no. 2, pp. 89-93.
Speirs, J. (2011) ‘Performing secrecy: Maintaining the Hidden Identity of Research Informants in Public’ in Jamieson, L., Simpson, R. and Lewis, R. (eds.) Researching Families and Relationships: Reflections on Process, Palgrave Studies in Family & Intimate Life, Basingstoke: Palgrave Macmillan.
Blyth, E., Frith L., Jones C. and Speirs, J. (2009) ‘The Role of Birth Certificates in Relation to Access to Biographical and Genetic History in Donor Conception’, International Journal of Children's Rights, 17/2 (2009), pp. 207-233.
Speirs, J. (2008) ‘Who’s the Daddy?’ in Genomics Network Newsletter March 2008, pp24-25, http://www.genomicsnetwork.ac.uk/media/egnfullmin2.pdf
Speirs J. (2008) ‘Sperm donors are curious too’ in The Edge, ESRC research news, Spring 2008 http://www.esrc.ac.uk/ESRCInfoCentre/Images/edge27_tcm6-26069.pdf
Speirs, J. (2007) ‘Keeping secrets: ethical and practical problems in fieldwork at home’ in Radmila Lorencová and Jennifer Speirs (eds.).Reflection of Man. Praha: FHS UK.
Speirs J.M. (2007) ‘Personal semen donors: report of a survey of UK clinics’ provision of donor-assisted conception treatment to patients using own known donors’. Published on National Gamete Donation Trust’s website April 2007.
Blyth, E. and Speirs, J. (2004) ‘Meeting the rights and needs of donor-conceived people: the contribution of a voluntary contact register’. Nordisk Socialt Arbeid Volume 24, 4, pp. 318-330
Blyth, E., Crawshaw, M., Haase, J. and Speirs, J. (2001) 'The implications of adoption for donor offspring following donor assisted conception', Child and Family Social Work, 6, 4, 295-304.
Speirs, J. (1998) ‘Scotland’s Birthlink: meeting the emotional and information needs of the adoption community’ in Separation, reunion, reconciliation: proceedings from the Sixth Australian Conference on Adoption, Brisbane, June 1997. Brisbane, Queensland. Stones Corner, Qld.: J. Benson for Committee of the Conference, 1998.
Speirs, J. (1997) ‘Adjusting to infertility - a life-long process for adoptive families?’ In Adoption and Healing: Proceedings of the International Conference on Adoption and Healing, Wellington, Aotearoa/New Zealand 1997. New Zealand Adoption Education and Healing Trust: Wellington, New Zealand.
BOOK REVIEWS (selection)
Konrad, M: ‘Nameless Relations: Anonymity, Melanesia and Reproductive Gift Exchange between British Ova donors and Recipients’ in Medical Anthropology Quarterly, 2008 Vol 22, Issue 4, pp 427-428
Howell, S: ‘The Kinning of Foreigners: Transnational Adoption in a Global Perspective’ in Ethnos, 2008, Volume 73, Issue 4, pp 566-567.
Olga van den Akker
Olga van den Akker BSc PhD
Emeritus Professor Olga B.A. van den Akker BSc PhD AFBPsS, C.Psychol is Professor of Health Psychology at the Department of Psychology, Middlesex University, London.
Since completing her BSc in Psychology at the University of East London, she was awarded an MRC studentship at St George’s Hospital Medical School, University of London to carry out a PhD investigating the Psychophysiology of the menstrual cycle. This was followed by post doctoral research at the Institute of Psychiatry and St. Mary’s hospitals London, and senior academic posts at the University of East London, University of Birmingham and Aston University. She was an HFEA Advisor, Editor in Chief of the Journal of Reproductive & Infant Psychology and has been a member of the executive committees of the British Infertility Counselling Association, the British Fertility Society and the Society for Reproductive & Infant Psychology. She is currently on the editorial board of the Journal of Reproductive Psychology. Her main research interests focus on reproductive health psychology.
a. Authored books:
van den Akker, O.B.A. (2017) Surrogate Motherhood Families. Palgrave MacMillan.
van den Akker, O.B.A. (2012) Reproductive Health Psychology. Wiley-Blackwell. ISBN-13: 978-0470683385van den Akker, O.B.A. (2002) The Complete Guide to Infertility: Diagnosis, Treatments, options. Free association Books, March. ISBN: 1-85343-540-6
b. Edited book:
Editors, Prof Caroline Hollins-Martin, Prof Olga van den Akker, Prof Colin Martin and Prof Victor R Preedy (2014) ‘Handbook of Diet and Nutrition in the Menstrual Cycle, Conception and Fertility’ Wageningen Academic Publishers.
Articles and chapters in edited books:
van den Akker,O.B.A (2018 ) Chapter: Psychological and ethical issues in third party assisted conception and surrogate motherhood. In: Pathways and barriers to the transition to parenthood –Existential concerns regarding fertility, pregnancy and early parenthood. (Ed) Orit Taubman –Ben-Ari.
van den Akker,O.B.A (2018) Chapter 7. Assisted conception, including fertility preservation, surrogate motherhood, gamete / embryo donation, and in vitro fertilization, In: International Handbook of Women’s Sexual and Reproductive Health.Eds Jane Ussher, Joan Chrisler and Janette Perz. Routledge.
van den Akker,O.B.A (2015) Chapter: Emotional and psychosocial risk associated with fertility treatment. Reducing Risk in Fertility Treatment, edited by Raj Mathur. Springer Science + Media
van den Akker,O.B.A (2012) Chapter 16 The Maternity Blues pp187-194. In: Martin,C (Ed) Perinatal Mental Health. ISBN: 978-1905539499 • March 2012 • M&K Publishing
van den Akker,O.B.A (2012) Chapter 8 Sexual Dysfunction pp107-116. In: Martin,C (Ed) Perinatal Mental Health ISBN: 978-1905539499 • March 2012 • M&K Publishing
van den Akker,O.B.A (2012). Chapter 11 Premature labour and delivery pp137-144. In: Martin,C (Ed) Perinatal Mental Health. ISBN: 978-1905539499 • March 2012 • M&K Publishing
van den Akker, O.B.A. (2011) The Menstrual Cycle: Psychological, behavioural, physiological and nutritional factors. In Preedy VR Watson RR & Martin CR (Ed) International Handbook of Behaviour, diet and Nutrition. Part 6, 879-888, DOI: 10.1007/978-0-387-92271-3_58 http://www.springerlink.com/content/?Author=Olga+van+den+Akker
van den Akker,O.B.A (2010) Nature and Nurture: What do theory and research tell us. In: Crawshaw,M & Balen,R (Eds) Adoption after infertility: Messages from Practice, Research and personal experience. Jessica Kingsley Publishers Ltd. Chapter 11, 164-179.
van den Akker,O.B.A (2010). Surrogate Mothers. In: Tyano,S Keren,M Herrman,H & Cox,J.(Eds) Parenthood and Mental Health: A bridge between Infant and Adult Psychiatry. Wiley-Blackwell. PP39-49. ISBN 978-0-470-74722-3
van den Akker,O.B.A (2008) 'Alcohol and fertility' In: Martin,C. (Ed) 'Identification and treatment of alcohol dependency'. M&K Publishers, Keswick, UK. Chapter 6, 349-363.
van den Akker, O. & Rosenblatt, D. (1993) Psychological factors in pregnancy and post partum in women at risk for preterm labour/delivery. HPRT Publication, 5, 31-43.
van den Akker, O. & Steptoe, A. (1986) Stereotyped attitudes and symptom reporting during the menstrual cycle. In: Proceedings of the fifteenth European Conference on Psychosomatic Research (eds) Lacey,J.H.and Sturgeon,D.A.John Libbey, London, 271‑273.
Refereed articles in Academic Journals
Onyson, C., Alexis-Garsee, C., and van den Akker, O. (2018) Predicting attitudes towards seeking medical care among Nigerian immigrants in the UK" which you submitted to Mental Health, Religion & Culture. Under revision.
Whitelock, V., Nouwen, A., Houben, K., Rosenthal, M., Higgs, S., and van den Akker, O. (2018) Does working memory training improve dietary self-care in type 2 diabetes mellitus? Results of a double blind randomised controlled trial. Diabetes Research and Clinical Practice (in press)
Alexis-Garsee, Camille and Meehan, Stephanie and van den Akker, Olga (2018) An interpretative phenomenological analysis of discontinued use of the e-cigarette. Journal of Smoking Cessation . ISSN 1834-2612 (Accepted/In press)
Purewal, S. Chapman; S. van den Akker, O. (2018) Depression and state anxiety scores during assisted reproduction treatment are associated with outcome: a meta-analysis. Reproductive BioMedicine Online.
Payne, N, Seehan, S., van den Akker, O.B.A. (2018) Experiences and psychological distress of fertility treatment and employment. Journal of Psychosomatic Obstetrics and Gynecology. ISSN0167-482X
Onyson, C., Alexis-Garsee, C., and van den Akker, O. (2018) Adaptation of the Measurement of Acculturation Strategies for People of African Decent (MASPAD) in measuring Acculturation in British Nigerians. Mental Health, Religion and Culture.
Purewal, S. Chapman; S. van den Akker, O. (2018) A systematic review and meta-analysis of psychological predictors of successful assisted reproductive technologies. BMC Research Notes. 10:711. https://doi.org/10.1186/s13104-017-3049-z
Frith, L. Blyth, E, Crawshaw, M and van den Akker, O (2018). Secrets and disclosure in donor conception. Sociology of Health and Illness. 40 (1) 188–203. DOI:10.1111/1467-9566.12633
Purewal, S., Chapman, S.C. E. & van den Akker, O.B.A (2018) A systematic review and meta-analysis of lifestyle predictors of successful assisted reproductive technologies Journal of Psychosomatic Obstetrics and Gynecology.
Whitelock, V. Nouwen, A., van den Akker, O. and Higgs, S. (2018) The role of working memory sub-components in food choice and dieting success. Appetite. 124 . pp. 24-32. ISSN 0195-6663
van den Akker, Olga and Payne, Nicola and Lewis, Suzan (2017) Catch 22? Disclosing assisted conception treatment at work. International Journal of Workplace Health Management . ISSN 1753-8351 (Published online first)
Frith, L., Crawshaw, M., van den Akker, O. and Blyth, E. (2017) Searching for 'relations' using a DNA linking register: Constructions of identity, relatedness and kinship by adults conceived following sperm donation. BioSocieties. doi:10.1057/s41292-017-0063-2
Alexis-Garsee, C., Gilbert, H. and van den Akker, O.B.A. (2017) Difficulties quitting for smokers with and without a respiratory disease and use of a tailored intervention for smoking cessation – A qualitative study. Journal of Smoking Cessation. DOI: https://doi.org/10.1017/jsc.2017.5 Published online: 27 March 2017, pp. 1-9.
Blyth, E., Crawshaw, M., Frith, L. and van den Akker, C. (2017) Gamete donors’ reasons for, and expectations and experiences of, registration with a voluntary donor linking register. Human Fertility 21:268-278. DOI: 10.1080/14647273.2017.1292005.
Dyson, S., Liang, L., van den Akker, O. and Mike O'Driscoll (2017) The extent, variability, and attitudes towards volunteering among undergraduate nursing students: Implications for pedagogy in nurse education. Nurse Education in Practice, 23,15–22.
Whitelock, V., Nouwen, A., van Dam, K., Connock, M., van den Akker, O., & Higgs, S. (2017) Inhibitory Control Training in Eating Behaviour: A Systematic Review and Meta-Analysis. Appetite.
Olga van den Akker, Eric Blyth, Marilyn Crawshaw and Lucy Frith (2017) Views and Experiences of UK DonorLink Registrants. DCN Journal
Onyigbuo, C., Alexis-Garsee, C, and van den Akker, O. (2017) Nigerian clergy and healthcare professionals’ perceptions of health-seeking behaviours among Nigerian immigrants in the UK Mental Health, Religion and Culture. 19:10, 1043-1055, DOI: 10.1080/13674676.2017.1312320
Crawshaw, M, Frith, L., van den Akker, O and Blyth, E (2016) Voluntary DNA-based information exchange and contact services following donor conception: an analysis of service users’ needs. New Genetics and Society. 35 (4) 372-392. http://dx.doi.org/10.1080/14636778.2016.1253462
van den Akker, O, Postavaru,G and Purewal,S (2016) A systematic review and meta-analysis of the psychosocial consequences of twins and multiple births following medically assisted reproduction. RBMOnline. 33 (1) 1-14. doi.org/10.1016/J.rbmo.2016.04.009.
van den Akker, O. (2016) Reproductive health matters. The Psychologist. 29 (1) 2-5.
van den Akker, O, Camara, I and Hunt B (2016) ‘Together … for only a moment’ British media construction of altruistic non-commercial surrogate motherhood. Journal of Reproductive and Infant Psychology.34,3. 271-281.
Onyigbuo, C.C. Alexis-Garsee, C., and van den Akker, O.B.A. (2016) An exploration of health seeking behaviours among Nigerian Christians in the UK: Towards enhanced health services utilisation. Mental Health, Religion & Culture. pp. 255-267. doi.org/10.1080/13674676.2016.1166357.
van den Akker, O. Fronek, P. Blyth,E. and Frith, L. (2016) ‘This neo- natal ménage à trois’ British media framing of transnational surrogacy. Journal of Reproductive and Infant Psychology 34(1) 15-27.
Onyigbuo,C., van den Akker, O and Alexis-Garsee, C. (2015) A cross cultural study of the health-seeking behaviours of Nigerians from the perspective of Nigerian care providers: Challenges for collaboration. Humanities and Social Sciences Review. 537-554.
Payne, N., Lewis, S., and van den Akker O. (2015) Experiences of combining work and fertility treatment. BICA Journal, Spring, 13.
Abbasi M & van den Akker, O (2015) A systematic review of changes in women’s physical activity before, during and after pregnancy. Journal of Reproductive and Infant Psychology. 33, (4) 325-358
Daugirdaite,V, van den Akker O. & Purewal,S (2015) Posttraumatic stress and posttraumatic stress disorder after termination of pregnancy and reproductive loss: A systematic review. Journal of Pregnancy. Volume 2015 ID 646345, 14 pages.
van den Akker O.B.A. Crawshaw, M.C, Blyth, E.D and Frith, L.J (2015) Expectations and experiences of gamete donors and donor-conceived adults searching for genetic relatives using DNA linking through a voluntary register. Human Reproduction, 30 (1): 111-121.
Whitelock,V. Nouwen,A. Houben,K. van den Akker,O. Neira Miller,I. Narendan,P. Rosenthal, P and Higgs,S. (2015). Does neurocognitive training have the potential to improve dietary self-care in type 2 diabetes? Study protocol of a double blind randomised controlled trial.
BMC Nutrition, vol 1, no. 1, 11., 10.1186/s40795-015-0006-x
van den Akker O and Purewal S (2014) The effectiveness of persuasive communication techniques. Advances in Life Sciences and Health. Volume 2014 pages 1-11.
Abbasi M, van den Akker O & Bewley C (2014) Persian couples’ experiences of depressive symptoms and health-related quality of life in the pre- and perinatal period. J Psychosom Obstet Gynaecol, Early Online: 1–6 ! 2013 Informa UK Ltd. DOI: 10.3109/0167482X.2013.865722
van den Akker O.B.A. (2013) For your eyes only: Bio-behavioural and Psychosocial research objectives. Human Fertility. 16(1): 89–93 Invited paper
Crawshaw M, Blyth, E and van den Akker O (2012) The changing profile of surrogacy in the UK – Implications for policy and practice. Journal of Social welfare and family law, 1–11 http://dx.doi.org/10.1080/09649069.2012.750478
Crawshaw M Purewal S and van den Akker O (2012) Working at the margins: The views and experiences of court social workers on Parental Orders’ work in surrogacy arrangements. British Journal of Social Work. doi: 10.1093/bjsw/bcs045
Purewal S Crawshaw M and van den Akker O (2012) Completing the surrogate motherhood process: Parental Order Reporters attitudes toward surrogacy arrangements, role ambiguity and role conflict. Human Fertility, 15,2, 94-99.
van den Akker O and Purewal S (2011) Elective single-embryo transfer: Persuasive communication strategies can affect choice in a young British population. Reproductive BioMedicine Online, 23 (7), 838–850.
van den Akker O.B.A (2011) The Psychological and Social consequences of Miscarriage. Expert Review of Obstetrics and Gynacology. 6, no.3, p. 295 - 304
Abbasi, M, Bewley C and van den Akker O (2011). Personal and environmental factors encouraging or preventing healthy lifestyle behaviours among Persian couples: a phenomenological investigation. Journal of Reproductive and Infant Psychology 29, 2, 136-147.
Purewal, S., & van den Akker, O.B.A. (2010). Attitudes and Intentions to Donate Oocytes for Research. Fertility and Sterility. 93,4, 1080-7.
Purewal, S., & van den Akker, O. B. A. (2009). Systematic review of oocyte donation: investigating attitudes, motivations and experiences. Human Reproduction Update. 15 (5):499-515.
Purewal, S., & van den Akker, O.B.A. (2009) A study of the effect of message framing on oocyte donation. Human Reproduction. 24(12):3136-3143
Purewal, S., & van den Akker, O.B.A. (2009) A qualitative study on women’s perceptions of oocyte donation. Journal of psychosomatic obstetrics and gynaecology. 30, No. 4, Pages 215-222.
Purewal, S., & van den Akker, O. B. A. (2009). Attitudes and Intentions towards Volunteer Oocyte Donation. Reproductive Biomedicine Online, Vol 19. Supp. 1. pp 19-26. http://www.rbmonline.com/4DCGI/Article/Detail?38%091%09=%204173%09
Poote,A & van den Akker,O.B.A. (2009) British women’s attitudes to surrogacy. Human Reproduction, 24,1,139-145. http://humrep.oxfordjournals.org/cgi/content/abstract/den338v1
Donnelly,L, Shaw,R & van den Akker,O (2008) "eHealth as a challenge to 'expert' power: a focus group study of Internet use for health information and management." Journal of the Royal Society of Medicine. 101, 501-6.
Purewal, S., & van den Akker, O.B.A. (2007) The socio-cultural and biological meaning of parenthood. Journal of psychosomatic obstetrics and gynaecology, Vol. 28. No. 3, pp 79-86.
van den Akker, O.B.A (2007) Psychosocial aspects of Surrogate Motherhood Human Reproduction Update, 13,1, 53-62 http://humupd.oxfordjournals.org/cgi/reprint/13/1/53
van den Akker,O.B.A. (2007) Psychological trait and state characteristics, social support and attitudes to the surrogate pregnancy and baby. Human Reproduction, 22,8, 2287-2295.
Segev,J & van den Akker,O.B.A (2006) A review of ART family functioning. Invited paper for Clinical Effectiveness in Nursing, 9S2; e162-e170. Invited paper
van den Akker, O.B.A. (2006) A review of Gamete donor Family Contructs: Current research and future directions. Human Reproduction Update, 12,2, 91-101.
Purewal,S and van den Akker,O.B.A (2006) British women’s attitudes towards oocytes donation: Ethnic differences and altruism Patient Education and Counselling, 57,2, 183-189
van den Akker,O.B.A (2005) ‘A longitudinal pre pregnancy to post delivery comparison of Genetic and gestational surrogate and intended mothers: Confidence and Gyneology’.J Psychosomatic Obstetrics and Gynecology, 26,4, 277-284.
van den Akker,O.B.A (2005) ‘Coping, Quality of Life and psychiatric morbidity in 3 groups of sub-fertile women: Does process or outcome affect psychological functioning?’ Patient Education and Counselling 57,2, 183-189.
van den Akker,O.B.A (2003) ‘Genetic and gestational surrogate mothers' experience of surrogacy’ Journal of Reproductive and Infant Psychology 21, 2 / 145 – 161
van den Akker,O.B.A (2001) ‘The acceptable face of parenthood: Psychosocial factors of infertility treatment’. Psychology Evolution and Gender,3,2, 137-153.
van den Akker,O.B.A (2001) ‘Leisure activities and adolescent sexual behaviour’ Sex Education,1,2, 137-147.
van den Akker,O.B.A (2001) ‘Adoption in the age of reproductive technology. Journal of Reproductive and Infant Psychology.19,2, 147-159.
van den Akker, O.B.A. (2000) ’The importance of a genetic link in mothers commissioning a surrogate baby in the UK’. Human Reproduction,15,8, 110-117.
Smith-Wynter, L & van den Akker, O.B.A (2000) ‘Patients’ perception of crisis pain management in sickle cell disease: a cross cultural study’ Nursing Times Research,5,3, 2-11.
van den Akker, O.B.A, Andre, J, Lees, S. & Murphy,T (1999) ‘Adolescent sexual behaviour and knowledge. British Journal of Midwifery,7,12, 765-769.
Smith-Wynter, L & van den Akker, O.B.A (1999) The feasibility of nursing patients with Sickle Cell Crisis at home. British J. Community Nursing, 4,10, 531-537.
van den Akker,O.B.A. (1999) Organisational selection and assessment of women involved in surrogate motherhood. Human Reproduction. 14,1, 101-105. Impact factor 3.773
van den Akker, O.B.A. (1998) ‘A survey of the functions and responsibilities of organisations dealing with surrogate motherhood’. Human Fertility.1, 10-13.
van den Akker, O.B.A. (1998) ‘Surrogate motherhood: Demistifying the controversies’ British J. Midwifery.6,12, 768-770.
Colley, K & van den Akker, O (1998) ‘Developing a year 9 safe-sun programme’ Education and Health, 16,3, 55-59.
Eboh, W & van den Akker,O.B.A. (1997) Antenatal screening for couples at risk of having children with Sickle Cell Disorders. Midwives, 110, 1309, 26-27.
Molassiotes, A, van den Akker, O.B.A., Milligan,D.W. & Goldman,J.M. (1997) Symptom distress, coping style and biological variables as predictors of survival after Bone Marrow Transplantation. J. Psychosomatic Research, 42, 3. 275-285.
Molasiotis,A, van den Akker, O.B.A. & Boughton, B. (1997) Perceived social support, family environment and psychosocial recovery in bone marrow transplant long-term survivors. Social Science and Medicine, 44, 3, 317-325.
Molassiotis,A, van den Akker,OBA, Milligan,DW, Goldman,JM & Boughton,BJ (1996) Psychological adaptation and symptom distress in bone marrow transplant recipients. Psycho-Oncology, 5, 9-22.
Hewitt, A. & van den Akker, O.B.A. (1996) Dysmennorhoea, menstrual attitudes and GP consultation. British Journal of Nursing, 5,8, 480-484.
Molasiotis A, van den Akker O, Milligan DW, Goldman JM, Boughton BJ, Holmes JA and Thomas S. (1996) Quality of life in Long-term survivors of marrow transplantation with a matched group receiving maintenance chemotherapy. Bone Marrow Transplantation, 17, 249-258.
Eboh-Kanu,W. and van den Akker,O.B.A (1996) Health and Health promotion: Including inherited disorders in school health education programmes. British Journal of Nursing, 5, 1, 30-33.
Killingworth,A. and van den Akker,O.B.A. (1996) Quality of life of renal dialysis patients: Trying to find the missing measurement. International Journal of Nursing studies, 33, 1, 107-120.
Eboh-Kanu,W. and van den Akker,O.B.A (1996) Health and Health promotion: Including inherited disorders in school health education programmes. British Journal of Nursing, 5, 1, 30-33.
Molassiotis,A, Boughton,B.J. Burgoyne,T, and van den Akker,O.B.A.(1995) Comparison of the overall quality of life in 50 long-term survivors of autologous and allogenic bone marrow transplantation. J. Advanced Nursing, 22, 509-516.
Eboh-Kanu, W. & van den Akker, O.B.A. (1995) Service provision for sickle cell disease. British Journal of Midwifery, 3, 4, 189-195.
van den Akker O, Eves, F, Service S, & Lennon, B. (1995) Menstrual cycle symptom reporting in 3 British Ethnic groups. Social Science and Medicine, 40, 10, 1417-1423.
Molassiotis,A, van den Akker, OBA, Milligan,DW, and Boughton,BJ. (1995) Gonadal function and psychosexual adjustment in male long-term survivors of bone marrow transplantation. Bone Marrow Transplantation, 16, 253-259.
van den Akker,O.B.A, Eves,F,F, Stein,G.S and Murray, R.M. (1995) Genetic and environmental factors in premenstrual symptom reporting and its relationship to depression and a general neuroticism trait. Journal of Psychosomatic Research, 39,4, 477-487.
van den Akker, O., Packer, A. & Eves, F. (1995) Menstrual cycle symptom reporting and negative outlook. Health care for Women International,16,3 263-272.
Molassiotis,A, and van den Akker,O.B.A. (1995) Psychological stress in nursing and medical staff on BMT units. Bone Marrow Transplantation, 15, 449-454.
Molassiotis, A, Boughton, B.J. Burgoyne,T & van den Akker, O.B.A. (1994) Psychological and physical difficulties in patients post BMT. EBMT-NG Journal, 1, 2-6.
van den Akker, O. (1994) Something old, something new, something borrowed, and something taboo: Review article. Special Issue, Journal of Infant and Reproductive Psychology, 12, 179-188.
van den Akker, O. & Steptoe, A. (1994) The pattern of menstrual cycle symptom reporting in women attending a clinic for premenstrual syndrome. British J. Midwifery 2,5, 223-115.
Eboh, W & van den Akker, O. (1994) Antenatal care of women with sickle cell disease. British Journal of Midwifery, 2,1, 6-11.
Killingworth,V. Brooking, J.I, Atkinson,A, Michael, J and van den Akker, O. (1993) Selection, assessment and support in British renal units. EDTNA, XIX no 3, 27-28.
van den Akker, O. (1993) Prophylactic benefits of antenatal screening: Helpful or harmful? British Journal of Midwifery ,1,5, 220-223.
Stein, G. & van den Akker, O. (1992) The retrospective diagnosis of Postnatal Depression by questionnaire. Journal of Psychosomatic Research 36, 1, 67‑75.
van den Akker, O. & Steptoe, A. (1989) Psychophysiological responses in women reporting severe paramenstrual symptoms. Psychosomatic Medicine 51, 319‑328.
van den Akker, O., Neale, M., Stein, G. & Murray, R. (1987) Genetic and environmental variation in menstrual cycle histories of two British twin samples. Acta Geneticae Medicae et Gemellologiae 36, 541‑548.
van den Akker, O. & Steptoe, A. (1987) Psychophysiological responses in women with premenstrual and menstrual symptoms. Journal of Psychophysiology 1, 149‑158.
van den Akker, O. & Steptoe, A. (1985) Psychological and physiological menstrual cycle changes in women with menstrual and premenstrual symptoms. British Journal of Psychiatry 147, 164‑169.
Other refereed articles:
Crawshaw, M Blyth, E, & van den Akker O (2013) The Ethics and aesthetics of Paid Surrogacy. Obstetrics, Gynaecology and Midwifery News, Spring, 20-23.
Blyth, E, Hunt J and van den Akker O (2011) Evidence and models of best practice should guide recruitment of gamete donors. Bionews Commentaries, 17 October 2011. http://www.bionews.org.uk/page_109712.asp
Blyth,E, Crawshaw,M & van den Akker,O (2009) Disclosing donor information: A new code of silence. BioNews, Commentaries http://www.bionews.org.uk/commentary.lasso?storyid=4233
van den Akker,O.B.A. (2006) The psychology of surrogacy in the UK. BICA Journal, 13,3, 14-20. Invited paper
van den Akker,O.B.A (2005)Younger women may have more difficulty coping with infertility than older women. Clinician’s Reasearch Digest Nov, vol23, number 11, 3.
van den Akker,O.B.A. & Draper,H (2005) Ethics committees in assisted conception units. Infertility Network, 4, 21.
van den Akker,O (2000) Report on a symposium on surrogacy presented at the 20th. Annual Conference of the Society for Reproductive and Infant Psychology, Birmingham, 11-13 September 2000, Cots Newsletter, nov. 2000, 51, 18-19.
van den Akker,O and Pattison, H. (2000) Never Again…Until next year. A look back at the 20th. Annual Conference of the Society for Reproductive and Infant Psychology, Birmingham, 11-13 September 2000,By the conference Organisers Olga van den Akker and Helen Pattison. (2000) The Psychologist, 13,12, 591-592.
van den Akker O.B.A. (2000) What about the context. (2000) Education and debate article Response to Education and debate: For and against: Doctors should advise adolescents to abstain from sex. Stammers and Ingham. eBMJ 321 (7275):1520.
van den Akker O.B.A. (2000) Removal of donor anonymity. CHILD chat Winter, no 86, 33.
van den Akker O.B.A. (2000) Great expectations. Response to Brinsden et al (2000) Education and debate article ‘Treatment by in vitro fertilisation with surrogacy: experience of one British centre. eBMJ 320 (7239):924.
Eboh, W & van den Akker,O.B.A. (2000) Letter: What does it mean to have informed choice?. eBMJ,320, (7231)337-341.
van den Akker,O.B.A. (2000) Letter: Attitudes to adolescent boys sexual and reproductive health urgently needs changing.BMJ, 320 March 4, 643.
van den Akker O.B.A. (1999) Urgent need to change attitudes to adolescent boys sexual health. Response to Gavin Yamey’s Editorial ‘Sexual and reproductive health: what about boys and men’? eBMJ 11/22/9913:46:28
van den Akker,O.B.A (2010) Editorial ‘Surrogate motherhood: a critical perspective. Expert rev. Obstet. Gynecol, 5,1, 5-7.
van den Akker,O.B.A & Redshaw,M (2008) Editorial: Beliefs and attitudes during pregnancy and post natally. Journal of Reproductive and Infant Psychology, 26, 3.
Redshaw,M & van den Akker,O.B.A (2008) Editorial: Understanding factors which can influence the experience of pregnancy and childbirth. Journal of Reproductive and Infant Psychology, 26, 2 71-73.
van den Akker,O.B.A & Redshaw,M (2008) Editorial: The contextual challenges of successfully becoming a parent – from inception to completion Journal of Reproductive and Infant Psychology, 26, 1,1-3.
Redshaw,M & van den Akker,O.B.A (2007) Editorial:Maternal mental health & wellbeing Journal of Reproductive and Infant Psychology, 25.4.253-254.
van den Akker,O.B.A & Redshaw,M (2007) Editorial: Pregnancy and postnatal states and support. The effects of the partner. Journal of Reproductive and Infant Psychology, 25, 3, 171-172.
Redshaw,M & van den Akker,O.B.A (2007) Editorial: Starting with the baby. Journal of Reproductive and Infant Psychology, 25.2,103-105.
van den Akker,O.B.A & Redshaw,M (2007) Editorial: The breadth and depth of psychological research into reproductive health Journal of Reproductive and Infant Psychology, 25, 1,1-3.
Redshaw,M & van den Akker,O.B.A (2006) Editorial: The nature of relationships: maltreatment, mothering and migration Journal of Reproductive and Infant Psychology, 24.3.
van den Akker,O.B.A & Redshaw,M (2006) Editorial: Depression in the perinatal and postnatal period continues to challenge researchers and practitioners worldwide. Journal of Reproductive and Infant Psychology, 24, 2,73-75.
Redshaw,M & van den Akker,O.B.A (2006) Editorial: Researching parenting: in prospect and in retrospect Journal of Reproductive and Infant Psychology, 24, 1, 1-3.
van den Akker,O (2005) Editorial Long live Myths; Size and Shape do matter. Journal of Reproductive and Infant Psychology, 23, 4,299-301.
van den Akker,O (2005) Editorial Journal of Reproductive and Infant Psychology, 23, 3, 205-6
van den Akker,O (2005) Editorial: Choices and consequences in reproduction. Journal of Reproductive and Infant Psychology, 23, 2,117-119.
van den Akker,O & Gross, H (2005) Editorial: Management of aspects of self and others in reproductive health psychology. Journal of Reproductive and Infant Psychology, 23, 1,1-2.
van den Akker,O & Gross, H (2004) Editorial: Journal of Reproductive and Infant Psychology, 22, 4.
Gross, H & van den Akker,O (2004) Editorial: Reproductive Issues in the Public Eye. Journal of Reproductive and Infant Psychology, 22,3, 143-144.
van den Akker,O & Gross, H (2004) Editorial: Maternal attachment to the foetus and interactions with the infant and the case of (non) attachment in surrogates. Journal of Reproductive and Infant Psychology, 22, 2,55-56.
Gross, H & van den Akker,O (2004) Editorial: The importance of the postnatal period for mothers, fathers and infant behaviour. Journal of Reproductive and Infant Psychology, 22,1, 3-4.
van den Akker,O & Gross, H (2003) Editorial: The importance of the postnatal period for mothers, fathers and infant behaviour. Journal of Reproductive and Infant Psychology, 21, 4, 5-6.
van den Akker,O & Gross, H (2003) Editorial, Journal of Reproductive and Infant Psychology, 21, 3.
Gross, H & van den Akker,O (2003) Editorial, Journal of Reproductive and Infant Psychology, 21, 2, 5-6.
van den Akker,O & Gross, H (2003) Editorial, Journal of Reproductive and Infant Psychology, 21, 1, 5-6.
van den Akker, O.B.A. (1995) Editorial- Teenage pregnancy: A continued cause for concern? British Journal of Midwifery, 3,1,6-7.
Blyth E, Hunt J and van den Akker (2011) Evidence and models of best practice should guide recruitment of gamete donors. Bionews 629. 10 Oct. http://www.bionews.org.uk/page_109712.asp
Blyth,E, Crawshaw,M & van den Akker (2009) Disclosing donor information: A new code of silence? 9 March Bionews http://www.bionews.org.uk/commentary.lasso?storyid=4233
van den Akker, O.B.A. (2008) Changing attitudes to alternative families in British women. 21 July. Bionews. http://www.bionews.org.uk/commentary.lasso?storyid=3917
van den Akker, O.B.A (2008) Attitudes to surrogacy are improving, say researchers. Bionews, 466. 08 July http://www.bionews.org.uk/commentary.lasso?storyid=4233
van den Akker, O.B.A. (2008) Changing attitudes to alternative families in British women. 21 July. Bionews. http://www.bionews.org.uk/commentary.lasso?storyid=3917
Susie’s interest in families formed through all forms of assisted conception dates back to 2001 when she completed her DipSW/Masters dissertation on social work practice with lesbian parents.
After qualifying as a social worker, Susie initially held a number of social work and senior practitioner roles in two Midlands local authorities. She has also worked within the voluntary and private social care sectors. She joined Cafcass as a Family Court Adviser (FCA) in 2008, where she was able to develop her knowledge and interest in non-traditional family forms and fertility/conception issues. She practised within both public and private law, including adoption and HFEA work (both domestic and international Parental Order cases). As an FCA, she also developed and delivered training on Parental Orders and working with LGBT+ individuals and families internally within Cafcass as well as to external agencies.
She was appointed to the role of Improvement Manager within Cafcass’ National Improvement Service in 2016 and is now Senior Improvement Manager. She works within a team supporting quality improvement in front-line work to help Cafcass provide the best service possible to children and young people. Susie leads on ‘Parental Orders and Surrogacy’ and ‘Diversity’ within NIS and sits on Cafcass’ national Diversity Steering Group.
She is also Cafcass’ Practice Expert on Assisted Conception, which encompasses surrogacy, same-sex parenting, IVF and sperm/egg donation. She keeps abreast of front-line developments in this ever-evolving area of practice through regular ‘Practice Expert’ consultations with practitioners.
Outside of work, Susie is the mother of two donor-conceived young children. As a result of both personal and professional experience, she has a keen interest in the practical, psychological and legal implications for children born of surrogacy and/or gamete donation, and the adults involved in their story.
Susie holds a Master of Arts in Social Work with Distinction, gained from the University of Nottingham in 2001, along with the Post Qualifying Child Care Award and the Post Qualifying Award in Social Work, gained from the University of Sheffield in 2004. She speaks fluent French.
Anne Chien, Corresponding Member
Anne originally trained as a nurse in 1982 and worked in a variety of specialities within the NHS. She left nursing in 2003, changing her career after completing an Msc in Counselling and Health.
She also has experience of working within different counselling settings. She was employed as the Memory Clinic Counselling Sister in Ninewells Hospital, Dundee for 5 years and then became a Staff Counsellor in Occupational Health for NHS Tayside and Fife for over 10 years. She also has experience as a Counsellor in GP practice and worked as a Student Counsellor within the University of Abertay, Dundee for 3 years. She taught on the Post-Graduate Certificate and Diploma in Counselling Course at University of Abertay for 5 years and has also worked in private practice as a Counsellor and Counselling Supervisor.
Since 2010 she has been employed as the Infertility Counsellor in the Assisted Conception Unit in Ninewells Hospital, Dundee. She is also the Infertility Counsellor in the Dundee Fertility Associates Clinic and is the Specialist Counsellor for the Molar Pregnancy Follow-Up Service in Scotland.
Anne is a Senior Accredited Member of BACP and an Accredited Member of BICA. She was a member of the BICA Executive Committee from 2012-2018 and was Chair of BICA from May 2016-2018.
Gerry McCluskey is British Infertility Counselling Association’s (BICA) representative on PROGAR.
Gerry originally trained as a social worker and since 1983 has held a variety of practitioner and management posts in Family and Child Care/Child Protection Fieldwork and Family Placement (Fostering and Adoption). She has worked within both the statutory sector (Social Services) and the voluntary sector (Barnardos and Adoption Routes) in Northern Ireland.
Gerry’s role at Adoption Routes is to provide counselling for NHS and private patients who are experiencing issues with infertility as well as to birth parents whose children have been placed for adoption and adopted adults searching for their birth family. She continues to work with the full range of adoption social work tasks and provides training on the impact of infertility in adoption and the emotional impact of infertility.
Gerry has been a member of BICA since 2003 and a member of the BICA Executive since February 2010. She has also been a member of the Irish Fertility Counsellors’ Association, since its inception in 2009.
Gerry has a Masters in Social Work, an Advanced Diploma in Person Centred Counselling and is Relate trained.
Ann qualified as a social worker in 1991 and worked for 10 years as a member of an Adult Mental Health Service Team. Ann trained as a counsellor in 2001 and in 2002 took post as an Infertility Counsellor in the Department of Reproductive Medicine, St Mary’s Hospital NHS Foundation Trust in Manchester, where she continues to work today. Alongside this role, Ann works in private fertility clinics and for 10 years, worked as a School Counsellor for Beacon Counselling – a charity group based in Stockport.
Ann is qualified as a Counselling Supervisor and has enjoyed supervising counsellors working in a wide range of settings including rape crisis, women’s centres, child and adult bereavement, school counselling and infertility.
Ann maintains registration as a Social Worker and holds an Advanced Diploma in Counselling. She is accredited by the British Association of Counselling and Psychotherapy (BACP) and BICA.
Contact Chair Marilyn Crawshaw for more details firstname.lastname@example.org
Summary of PROGAR’s activities
Below, we set out a selection of the activities in which PROGAR has engaged and which provide a flavour of PROGAR’s work; our publications are available in full on this website.
Contribution to government and associated consultations
- White Paper Human Fertilisation and Embryology: A Framework for Legislation (written contribution, 1988)
- Parental Orders Regulations - Section 30 of the Human Fertilisation and Embryology Act (invited oral contribution 1993)
- Department of Health review of surrogacy arrangements (invited oral contribution 1998)
- Department of Health Preliminary Draft Consultation Paper and Preliminary Draft Position Paper Human Fertilisation and Embryology Act 1990: Providing Information about Gamete or Embryo Donation (invited oral and written comment 2000 – 2001)
- Department of Health consultation on the recommendations of the House of Commons Science and Technology Committee report Human Reproductive Technologies and the Law (written evidence 2005)
- Department of Health Review of the Human Fertilisation and Embryology Act 1990 (written evidence 2005)
- Department of Health Consultation on Proposals to Transfer Functions from the Human Fertilisation & Embryology Authority and the Human Tissue Authority 2012
- Response to the Law Commission’s 13th Programme Consultation 2016
In addition, Progar members have been consulted informally on a number of occasions including, for example, on surrogacy matters in relation to the Human Fertilisation and Embryology Act 2008 and accompanying Regulations and on the Department of Health & Social Care’s Surrogacy Guidance for Healthcare Professionals 2018.
Contribution to parliamentary consultations and parliamentary processes
- House of Commons Science and Technology Select Committee Human Reproductive Technologies and the Law (written evidence and invited oral evidence 2005)
- House of Lords/House of Commons Joint Committee on the Human Tissue and Embryos (Draft) (written evidence 2007) Ev 29, pp. 286-288 http://www.publications.parliament.uk/pa/jt200607/jtselect/jtembryos/169/169ii.pdf
- Parliamentary Briefing on the Human Fertilisation and Embryology Bill Committee Stage, House of Commons May 2008
- Parliamentary Briefing on the Human Fertilisation and Embryology Bill Report Stage October 2008
- House of Lords Select Committee on the Merits of Statutory Instruments on Draft Human Fertilisation and Embryology Authority (Disclosure of Donor Information) Regulations (written evidence 2009)
- Response to the Consultation by the Joint Committee on Human Rights on Cm 9525 The Government’s Response to an incompatibility in the Human Fertilisation & Embryology Act 2008: A remedial order to allow a single person to obtain a parental order following a surrogacy arrangement 2017
- Response to the Consultation to the draft Human Fertilisation and Embryology (Parental Order) Regulations 2018
Contribution to HFEA consultations
- Sex selection: Choice and responsibility in human reproduction (written evidence 2002-2003)
- Sperm, Egg and Embryo Donation (SEED) consultation: Regulation of Donor Assisted Conception (written evidence 2005)
- Tomorrow’s children: a consultation on guidance to licensed fertility clinics on taking in account the welfare of children to be born of assisted conception treatment consultation (written evidence 2005)
- Donating eggs for research: safeguarding donors (written evidence 2007)
- Donating sperm and eggs: have your say (written evidence 2011)
- Medical Frontiers: Debating Mitochondrial Replacement (written evidence 2012)
- Response to the draft 9th Code of Practice 2018
Contribution to Nuffield Council on Bioethics consultations
- Give and take? Human bodies in medicine and research (written evidence 2010)
- Donor conception: ethical aspects of information disclosure (oral and written evidence 2012)
Promotion of good practice
- The first dedicated guidelines for infertility counselling were published under the auspices of PROGAR and BASW (Blyth, E.  Infertility and Assisted Conception: Practice Issues for Counsellors).
- In 1988, the British Infertility Counselling Association (BICA) was established. PROGAR members played key roles in setting up BICA and in providing leadership roles, especially during the Association’s early years.
- Between 2001-2003 PROGAR participated in Department of Health funded working party headed by BICA to develop counselling guidelines in respect of application to the HFEA Register of Information (‘Opening the Record’: Planning the Provision of Counselling to People applying for Information from the HFEA Register. http://www.bica.net/downloadable/opening-record.
- In the mid 2000s, with increasing concerns about problems associated with cross border reproductive care, PROGAR and BASW worked with the International Federation of Social Workers to develop an international policy. This was approved by delegates at the 2008 IFSW World Congress (International policy on cross border reproductive services. be: http://ifsw.org/policies/cross-border-reproductive-services/
- In 2016, PROGAR worked with the BASW’s Ethics and Human Rights Committee to produce a BASW Position Statement on Surrogacy
From the beginning of its work, and drawing on members’ experience of the needs of adopted people and other people separated at an early age from birth parents, PROGAR campaigned for the rights of people conceived as a result of donor conception to be able to access full information about their genetic history. Although the Human Fertilisation and Embryology Act, 1990 implemented in 1991 failed to afford donor-conceived people such rights, PROGAR subsequently campaigned for the law to be reformed. Key activities included:
- lobbying of Department of Health, media, MPs and government ministers
- publication of Blyth, E., Crawshaw, M. and Speirs, J. (eds) (1998) Truth and the Child 10 Years on: Information Exchange in Donor Assisted Conception.
- National Conference: Donor information consultation – providing information about sperm, egg and embryo donors (16 May 2002)
- publication of Wincott, E. and Crawshaw, M. (2006) From a social issue to policy: social work's advocacy for the rights of donor conceived people to genetic origins information in the UK. Social Work in Health Care 43(2/3): 53-72.
The success of this campaign was realised following implementation in 2005 of the Human Fertilisation and Embryology Authority (Disclosure of Donor Information) Regulations 2004, removing legal protection of donor anonymity.
Subsequently, PROGAR has actively advocated for:
- protection of records relating to donor procedures undertaken before 1991 (since these have no legal protection, unlike similar records that have been afforded legal protection since implementation of the 1990 Human Fertilisation and Embryology Act in 1991)
- the rights of the offspring of donors to be able to access information about their half siblings
- the rights of those involved in a donor procedure to be able to access information about genetic relatives by mutual consent
- the right of parents of donor-conceived children to receive biographical, non-identifying information about the donor
- the rights of surrogate-born offspring to have access to information about their genetic and gestational parents
- the importance of the collection of good quality biographical information from donors and surrogates for use by recipient parents and offspring
- attention to the needs of donors involved in donor procedures undertaken before 1991 and their families
- adequate professional support, intermediary and counselling services for individuals genetically related through donor conception
Eric Blyth: June 2012, updated December 2013 and 2018 by Marilyn Crawshaw
BASW’s involvement in issues related to infertility, involuntary childlessness and reproductive technology date back to the early 1980s.
In 1982 BASW received an invitation from the Warnock Committee to provide evidence to its inquiry in human fertilisation and embryology.
A group of BASW members from the Sexuality Special Interest Group and the Special Interest Group on Obstetrics and Gynaecology provided a social work perspective on the issues considered by the Committee. Subsequently, following publication of the report, BASW established a Warnock Report Project Group to develop the Association’s response to it. At around the same time, BASW’s Scottish Committee set up a working party, the Warnock Issues Working Party, with a similar remit. The two groups seem to have operated independently of each other.
However, a new group, the Warnock Project Group, comprising members of both groups met in 1986 and this subsequently become known as PROGAR (Project Group on Assisted Reproduction).
Although PROGAR was initially expected to have a working life of 12 months only, it has remained operational since that time and has been a unique force within social work.
It remains the only group under the auspices of a national social work professional association anywhere in the world with a specific remit to consider issues relating to infertility, involuntary childlessness and assisted human conception and to promote a distinctly social work perspective.
Its members have established nationally and internationally recognised credibility in relation to clinical practice, policy development and academic research.
PROGAR has always taken the view that an inclusive organisation rather than one remaining exclusive to social workers, was most likely to be successful.
Therefore membership of PROGAR has included donor-conceived people, representation from Birth Registration Campaign, British Infertility Counselling Association (BICA), British Association for Adoption and Fostering (BAAF, now CoramBAAF), Donor Conception Network (the UK’s largest support group for families built using donor conception, that provides information and support for parents, offspring and donors), National Association of Guardians ad Litem and Reporting Officers (NAGALRO), Children and Family Court Advisory and Support Service (CAFCASS), Children and Families Across Borders (CFAB), and individual researchers and practitioners. In the past PROGAR has had representation from Barnardo’s, the Children’s Society and UK DonorLink (the UK’s voluntary contact register for donor conception from 2004 to 2013).
PROGAR - Publications and resources
PROGAR's response to surrogacy law reform consultation conducted by the Law Commission of England and Wales, and Scottish Law Commission - 30th September 2019
PROGAR’S written submission on the Government’s Response to the Report of the Joint Committee on Human Rights on the first Human Fertilisation & Embryology (HF & E)Act 2008 (Remedial) Order 2018 and on the revised HF & E Act 2008 (Remedial) Order 2018 - 29th August 2018
PROGAR Response to Consultation on Human Fertilisation Embryology (Parental Order) Regulations - 23rd March 2018
BASW Position Statement: Surrogacy - 14th December 2016
Law Commission 13th Programme Consultation - PROGAR RESPONSE - 30th September 2016
Ripe for exploitation - Professional Social Work article July/August 2014
What are children’s ‘best interests’ in international surrogacy?
Medical Frontiers - HFEA Consultation on Mitochondrial Replacement Technigues, November 2012
Department of Health Consultation on Proposals to Transfer Functions from the Human Fertilisation & Embryology Authority and the Human Tissue Authority - PROGAR submission September 2012
Donor conception: ethical aspects of information disclosure. Written evidence to Nuffield Council on Bioethics, March 2012
Consultation on Human Bodies in Medicine and Research. Written evidence to Nuffield Council on Bioethics, June 2010
Parliamentary Briefing on Human Fertilisation and Embryology Bill October 2008
Parliamentary Briefing on Human Fertilisation and Embryology Bill May 2008
PROGAR Written submission to the Joint Committee on the Draft Human Tissue and Embryos Bill - June 2007
Department of Health: Review of the the Human Fertilisation & Embryology Act: A public consultation. PROGAR submission November 2005
HFEA SEED (Sperm, egg and embryo donation) Review: Regulation of Donor Assisted Conception, PROGAR submission January 2005
Oral evidence from PROGAR to the House of Commons Science and Technology Select Committee Human Reproductive Technologies and the Law Ev 321-323 APPENDIX 40, June 2004
Written evidence from PROGAR to House of Commons Science and Technology Select Committee Human Reproductive Technologies and the Law Ev 321-323 APPENDIX 40, June 2014
HFEA Consultation on Code of Practice Guidance on 'Welfare of the Child@ assessments:Tomorrow’s Children, PROGAR submission January 2004
Department of Health Public Consultation on Sex Selection: Choice and Responsibility in Human Reproduction, PROGAR submission, December 2003
Cafcass looks after the interests of children involved in family proceedings. We work with children and their families, and then advise the courts on what we consider to be in the best interests of individual children.
Children and Families Across Borders (CFAB) is a unique UK-based charity which identifies and protects children who have been separated from family members as a consequence of trafficking, abduction, migration, divorce, conflict and asylum, as well as other vulnerable individuals in often desperate circumstances.
CoramBAAF work with everyone involved with adoption and fostering across the UK. Our regional and country offices in England, Wales, Scotland and Northern Ireland, provide services to meet the needs of some of the UK's most vulnerable children and young people.
Donor Conception Network are a supportive network of 1,600 mainly UK based families with children conceived with donated sperm, eggs or embryos, those considering or undergoing donor conception procedures; and donor conceived people.
Nagalro is a professional association for social work practitioners who work in the children and families field and represent children in public and private court proceedings. It has a reputation for excellence in the services it provides: its training, journal, and the influence of its campaigning and responses.