About PROGAR
PROGAR (Project Group on Assisted Reproduction) - history
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.
PROGAR has over the years worked variously in partnership with donor-conceived adults, Barnardo’s, Children’s Society, Donor Conception Network, British Infertility Counselling Association (BICA), British Association for Adoption and Fostering (BAAF), National Association of Guardians ad Litem and Reporting Officers (NAGALRO), Children and Family Court Support Service (Cafcass), Children and Families Across Borders (CFAB) and UK DonorLink (the UK’s voluntary contact register for donor conception from 2004 to 2013).
PROGAR has been actively engaged in the following key areas:
- Contributing to government, parliamentary and other associated consultations
- Contributing to consultations initiated by the statutory UK regulatory body, the Human Fertilisation and Embryology Authority
- Promoting good practice in policies and services for people conceived as a result of donor conception or surrogacy procedures, donors, surrogates and their families and networks, in particular taking a lifespan perspective
PROGAR has consistently advocated openness about donor conception and/or surrogacy and was a core part of the campaign to end donor anonymity in the UK.
PROGAR is also a member of the HFEA Professional Stakeholders Group.
In addition, individual members of PROGAR have contributed to practice and policy development in other jurisdictions, including Australia, New Zealand, Canada, USA, Hong Kong and Japan.
PROGAR continues to work with and support the British Infertility Counselling Association (BICA) in advocating for the needs of people coping with fertility difficulties or involuntary childlessness without the use of donor conception or surrogacy.
Chair: Dr Marilyn Crawshaw
PROGAR membership
- Susie Blamire, Cafcass
- Laura Bridgens, DCUK
- Dr Julia Feast, Birth Registration Campaign and Julia Feast Consultancy, London
- Professor Lucy Frith, University of Manchester
- Debbie Howe, BICA (British Infertility Counselling Association)
- Jennifer Hunt, independent member
- David Jones, CFAB (and link person for BASW)
- Olivia Montuschi, Donor Conception Network
- Dr Jennifer Speirs, BASW, Edinburgh
- Fiona Wallace, NAGALRO
- Anne Chien, (corresponding member)
- Gerry McCluskey, (corresponding member)
Biographies
Marilyn Crawshaw - Chair
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 in fertility counselling), she has written and researched into related areas including the experiences of donor conception, surrogacy, cancer-related fertility, adoption and talking to children about their origins. Marilyn has regular contact with those directly affected by donor conception and surrogacy, has sat on many research advisory groups, gives talks regularly and has wide international networks.
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 early 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) and has been consulted about the 2022-23 review of these services. A founder member of the British Infertility Counselling Association (BICA), Marilyn is editor of the BICA Practice Guide series and she contributes to the Destination Parenthood workshops run by the peer support organisation, Donor Conception Network. Marilyn is also a member of the UK Birth Registration Reform Group.
Recent Selected publications regarding donor conception and surrogacy
Full list available at https://www.york.ac.uk/business-society/people/marilyn-crawshaw/#tab-3
Adams, D., Crawshaw, M., Gilman, L. and Frith L. (2023) Accessing origins information: the implications of direct-to-consumer genetic testing for donor-conceived people and formal regulation in the United Kingdom IN D. Dempsey and F. Kelly (eds) Donor-linked families in the Digital Age: Relatedness and Regulation Cambridge, Cambridge University Press
Crawshaw, M and Barnsley, N (2022) Commentary: Why egg donors need to be brought out of the shadows in surrogacy arrangements BioNews 19 December 1172 https://www.progress.org.uk/why-egg-donors-need-to-be-brought-out-of-the-shadows-in-surrogacy-arrangements/
Crawshaw, M., Indekeu, A. and Ellis, J. (2022) Family Life after Donor Conception – Clinical Guide IN S. Covington. S.N. (ed) Covington Fertility Counselling Cambridge, Cambridge University Press
Ellis, J., Crawshaw, M., and Indekeu, A.. (2022) Family Life after Donor Conception – Case Study IN S. Covington. S.N. (ed) Covington Fertility Counselling Cambridge, Cambridge University Press
Nunn J.S., Crawshaw M., Lacaze P. (2021) Co-Designing Genomics Research with a large group of donor-conceived siblings (2021) Research, Involvement and Engagement https://doi.org/10.1186/s40900-021-00325-7
Nunn J.S., Crawshaw M., Lacaze P., et al. Co-Designing Genomics Research with Donor-Conceived Siblings (STARDIT Beta Version Report). https://www.wikidata.org/wiki/Q108618394 Accessed September 7, 2021
Crawshaw, M. and van den Akker, O. (2021) How many is too many? Who is thinking about the children? BioNews 1099 https://www.bionews.org.uk/page_157143
Crawshaw, M., Pericleous-Smith, A., and Dark, S. (2021) Counselling Challenges Associated with Donor Conception and Surrogacy Treatments - Time for debate Human Fertility https://doi.org/10.1080/14647273.2021.1950850
Crawshaw, M. (2020) Emerging Challenges Relating to Gamete(s) Donation: Recent developments in the UK and their international implications IN Katharina Beier, Claudia Brügge, Petra Thorn, Claudia Wiesemann (eds) Assistierte Reproduktion mit Hilfe drutter (Assisted Reproductive Medicine with the assistance of 3rd parties) pp 401-414 Berlin, Springer
Blyth, E., Crawshaw, M., Frith, L. and Jones, C. (2020) Donor-conceived people’s views and experiences of their genetic origins IN Katharina Beier, Claudia Brügge, Petra Thorn, Claudia Wiesemann (eds) Assistierte Reproduktion mit Hilfe drutter (Assisted Reproductive Medicine with the assistance of 3rd parties) pp 361-388 Berlin, Springer
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
http://dx.doi.org/10.1016/j.rbms.2016.12.004
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
Susie Blamire
Susie Blamire
Susie’s interest in ‘modern families’ and 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).
She was appointed to the role of Improvement Manager within Cafcass’ National Improvement Service in 2016 and is now Head of Practice. She leads 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’ Operational Equality, Diversity and Inclusion group.
She is also Cafcass’ Peer Practice Specialist on Modern Families, which encompasses surrogacy, same-sex parents and gamete donation. She keeps abreast of front-line developments in this ever-evolving area of practice through regular consultations with practitioners and delivering presentations nationally. She has been a member of the Surrogacy UK Ethics Committee since 2018.
Outside of work, Susie is the mother of two donor-conceived 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.
Laura Bridgens
Laura Bridgens
I am a late discovery (2021) donor conceived adult conceived via anonymous donor sperm in 1980 at Kings College Hospital.
As founder of Donor Conceived UK and chair of the Donor Conceived Register Registrants Panel I hold space for almost 750 (as at Nov 2024) UK DCP and former donors in a private Facebook group so am very close to the coal face in terms of the legacy issues of anonymous donations and the psychosocial aspects we often experience. Our website "Donor Conceived UK" is a growing resource, and we hope to create a digital support hub.
In 2023 we launched a consultation to identify the need to create Donor Conceived UK. It can be found at Get access to the Donor Conceived UK (DCUK) Consultation report here! – Donor Conceived UK
Our 2024 response to the HFEA’s proposals to modernise fertility law can be found here:
UK Legislation – Donor Conceived UK
These two documents are a good starting point to our intentions and ambitions.
Dr Julia Feast
Dr Julia Feast OBE, PhD, MA, AASW, CQSW
Julia Feast OBE, is an Independent Consultant, specialising 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 since the late 1990s.
Selected Publications
Books:
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.
Professor Lucy Frith
Professor Lucy Frith
Lucy Frith is Professor of Bioethics and Health Research, at the Centre for Social Ethics and Policy, School of Law, University of Manchester. Her research focuses on the social and ethical aspects of improving healthcare practice and policy, with a long-standing interest in the social and ethical aspects of reproductive technologies, empirical ethics and public involvement. She has researched gamete and embryo donation for forming families for over 20 years and is particularly interested in information sharing between those involved in donor conception, she has recently completed an ESRC grant on direct-to-consumer genetic testing and donor conception. Manchester University - Connected DNA
She is a member of the Executive Committee of the European Society of Human and Reproduction and Embryology (ESHRE) and has held visiting professorships at the Centre for Medical Ethics and Law the University of Hong Kong and Charles University, Prague.
Debbie Howe
Debbie Howe
Debbie qualified as a person centred counsellor in 2008 and has worked within various agencies, including Relate, counselling adults, children and young people.
In 2015 Debbie began working as a fertility counsellor within an NHS fertility centre offering support counselling and implications counselling for individuals and couples who attended the clinic.
In 2023 Debbie took up a post with a private fertility in London as a patient support manager and fertility counsellor.
Debbie is an accredited member of BACP and BICA. Debbie is currently on the BICA Executive Committee as the Membership Secretary for BICA and has recently joined the BICA Training Team delivering training to external professional organisation.
As well as providing counselling supervision and supporting a small number of private clients, Debbie also has a level 7 qualification in Psycho-Spiritual Care.
Debbie holds the following qualifications:
- Level 4 Diploma in The Theory and Practice of Person Centred Counselling
- Level 5 Diploma in Relationship Counselling
- Level 5 Diploma in Creative Interventions within the Counselling Relationship
- Level 6 Diploma in Counselling Supervision
Jennifer Hunt
Jennifer Hunt DASS, CQSW, SAMBICA
Jennie is a founding member and was first chairperson, of the British Infertility Counselling Association (BICA).
Jennie has many years’ experience of providing counselling to people affected by infertility both in the UK and Australia. She works with couples and individuals who are dealing with the complex issues that can arise when it is difficult to conceive or carry a child. She is an Accredited Member of the British Association of Counselling and Psychotherapy (BACP), a Senior Accredited Member of the British Infertility Counselling Association (BICA), as well as having qualifications in both stress management and couple counselling. She has a private therapy practice, acts as a mentor for counsellors who are working towards accreditation and a professional supervisor for other counsellors and therapists.
Jennie has a long-standing commitment to ensuring the highest quality of care in fertility counselling with a particular interest in the issues that people face when considering egg/sperm or embryo donation or creating a family through surrogacy. She was the founding member and first chairperson of BICA, a committee member of the British Fertility Society and a Board member of the Human Fertilisation and Embryology Authority. She is currently Chair of BICA’s Training Committee, a member of the BICA Accreditation Board and a member of the Imperial College Clinical Ethics Committee.
Publications
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
Dr David N Jones
Dr David N Jones
David is a qualified social worker (1974) with extensive national and local government, NGO and private sector experience. He was President of the International Federation of Social Workers (IFSW) 2006-10 and Global Coordinator of The Global Agenda for Social Work and Social Development (2010-2020).
He is a Board Member of the Commonwealth Organisation for Social Work (COSW) and its Main Representative to the Commonwealth Institutions. He was Chair of the BASW International Committee and a member of BASW Council (2017-21) and co-opted for many years on the Policy, Ethics and Human Rights Committee (2011-21). His doctorate researched evaluating the quality of social services. He is a Trustee of Children and Families Across Borders (ISS-UK) and has published and spoken extensively on social work practice and management in the UK and overseas.
Olivia Montuschi
Olivia Montuschi
Olivia is a counsellor, teacher and parenting consultant. Now semi-retired, she works part-time as a Practice Consultant for Donor Conception Network (DCN). 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.
Selected publications
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
Dr Jennifer Speirs
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 tutoring within the School of Social and Political Science at the University of Edinburgh: J.M.Speirs@ed.ac.uk
Jennifer’s work pro bono has included 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. (2017) ‘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-anthropolog…
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)
Nordquist, P and Gilman, L: ‘Donors: Curious Connections in Donor Conception’
in British Journal of Social Work, 2023, https://doi.org/10.1093/bjsw/bcad131
Howell, S: ‘The Kinning of Foreigners: Transnational Adoption in a Global Perspective’ in Ethnos, 2008, Volume 73, Issue 4, pp 566-567.
Fiona Wallace
Fiona Wallace BA Hons, DIPSW, MA
Fiona Wallace is an Independent Social Worker, and former employed Children's Guardian, with particular experience in working with adults with mental health, drug and alcohol issues, and adverse childhood experiences. She has over 30 years direct work experience in mental health provision, statutory child protection, adoption and fostering, and children in care social work. Her first degree was in psychology and philosophy, followed by social work training and management, and a Masters in contemporary fine art and cultural contexts. Fiona is the Vice Chair of NAGALRO Council. She is responsible in particular with the planning and delivery of conferences, and training. Other focuses include the Black Children's Lives Matter sub group, policy and strategy.
Anne Chien - corresponding member
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.
Anne 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 Anne has been employed as the Fertility Counsellor in the Assisted Conception Unit in Ninewells Hospital, Dundee. Until recently, she was also the Fertility Counsellor in the Dundee Fertility Associates Clinic and 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. She is currently the BICA Scottish Representative.
Gerry McCluskey - corresponding member
Gerry McCluskey
Gerry 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.
Contact Chair Marilyn Crawshaw for more details marilyn.crawshaw@york.ac.uk
A selection of activities in which PROGAR has engaged, providing a flavour of PROGAR’s work
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.
NB:- For more up-to-date publications please see the "Publications & Resources" list below
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
NB:- For more up-to-date publications please see the "Publications & Resources" list below
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
NB:- For more up-to-date publications please see the "Publications & Resources" list below
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. [1995] 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
PROGAR - Publications and resources
If you wish to receive a copy of any of their publications, please email PROGAR Chair, Marilyn Crawshaw, on marilyn.crawshaw@york.ac.uk
PROGAR submission to consultation on reforms to health regulation in Victoria, Australia May 2024
PROGAR submission to Children's Commissioner for England Family Review 26th May 2022
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
Useful Links
British Infertility Counselling Association (BICA)
BICA is the only professional infertility counselling association recognised by the Human Fertilisation and Embryology Authority and the British Fertility Society in the UK. As well as providing accreditation, training and support to fertility counsellors and representing their views and interests, it aims to inform and educate its colleagues in the field of assisted conception and beyond and the wider public about the psychological and social impact of involuntary childlessness.
Cafcass
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)
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 Adoption & Fostering Academy
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
Donor Conception Network are a supportive network of mainly UK based families with children conceived with donated sperm, eggs or embryos, those considering or undergoing donor conception procedures (including in surrogacy arrangements); and donor conceived people.
Nagalro
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.