Project Group on Assisted Reproduction (PROGAR)

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). 

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’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

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.
 

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.

ResearchGate - profile Lucy Frith

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 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

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.

Sarah Jones is a dedicated advocate for ethical surrogacy and egg donation, with over two decades of experience in the field. She is the Head of Surrogacy at SurrogacyUK - https://surrogacyuk.org/surrogacyuk/ - where she plays a key role in ensuring surrogacy practices in the UK are ethical, transparent, and supportive of all parties involved. 

She is also the Founder of the newly established Surrogate and Egg Donor Alliance, a Community Interest Company (CIC) that she hopes will provide a safe, independent space where surrogates and egg donors can access unbiased information, share experiences, and advocate for their rights. Sarah is a passionate believer in openness and transparency in both surrogacy and egg donation, ensuring that those who embark on these journeys are fully informed and empowered to make the best decisions for themselves and their families. 

Sarah’s personal experience as both a surrogate and a known egg donor gives her a unique and deeply personal perspective on the realities of assisted reproduction. She hopes that this lived experience, combined with her professional expertise, will enable her to contribute meaningfully to policy discussions, regulatory consultations, and initiatives aimed at improving the landscape of surrogacy and egg donation in the UK. 

Committed to advocating for openness in assisted reproduction, Sarah has actively supported the movement towards greater transparency, including the campaign to end donor anonymity in the UK. She continues to work towards promoting best practices, ethical policies, and a lifelong approach to the well-being of all individuals affected by donor conception and surrogacy. 
 

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
 

Chipo Mukoki, is social work practitioner and a child rights advocate. 

Having qualified as a Social Worker in Zimbabwe in 2002, she has over 20years experience working in government, non-governmental organisations and the United Nations in Zimbabwe, the UK, Switzerland and the Netherlands. She started her career in humanitarian work but has especially focused on safeguarding and care of children and young people in alternative care. This includes 14years in specialist children's services in England, with 8years managing fostering services, leading fostering service quality assurance, Advising Fostering Panels, being a Member of an Adoption Panel and as a social work Practice Teacher. 

Chipo currently leads NdiriANI, an emerging social work and child rights advocacy consulting service based in the Netherlands and Zimbabwe. NdiriANI uses social work interventions to inform, equip and challenge decision makers and duty bearers to put children's rights at the heart of decision making on matters that impact children’s lives. 

Chipo has a blend of social work and legal expertise with a Bachelor of Social Work (Hons), a Masters in Gender and Development, a Post Graduate Diploma in Safeguarding and Caring for Children and Young People incorporating the Post Qualifying Award in Social Work and a Master of Laws: Advanced Studies in International Children’s Rights (LLM). 

Chipo is currently completing her Professional Doctorate in Advanced practice and research: social work and social care at the Tavistock and Portman NHS/University of Essex, UK. Her research is focused on the experience of infertility amongst black people of African descent living in the UK, how this relates to their decision making about alternative ways of family formation in particular donor conception. 

The research seeks to explore the potential role of relationship based and therapeutic social work intervention in the context of fertility treatment/alternative family formation and how this can influence decision making and outcomes for children e.g. telling and openness within donor conceived families. Chipo’s research is informed by psychodynamic, psychoanalytic and systemic thinking and key themes like culture, religion, gender dynamics, racism, structural exclusion and inclusion, organisation functioning and change processes.

Chipo’s research interest in fertility issues, alternative family formation and assisted reproductive conception is informed by her lived experience of infertility as a black woman of African descent in the UK. She is passionate about the right to identity and information for children in alternative care, adopted people and children born via donor conception and surrogacy. Aside from her work in fostering and adoption, Chipo’s knowledge and interest in non-traditional family forms was further enhanced by her Master of Laws (LLM) Thesis research on the right to preserve and know one’s identity including family relations and right to cultural heritage for children born via surrogacy. She is also a professional member of Donor Conception Network, UK.

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 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.  
 

Gerry McCluskey - corresponding member

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.
 

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. 

• 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 

• 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 

• 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 

• Give and take? Human bodies in medicine and research (written evidence 2010)
• Donor conception: ethical aspects of information disclosure (oral and written evidence 2012)

• 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.

• 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

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’s response to minister regarding the joint Report of the Law Commission of England and Wales and the Scottish Law Commission into Surrogacy Law Reform 2023 (909.59 kB) 

PROGAR Submission to consultation Modernising the regulation of fertility treatment and research involving human rights embryos 14th April, 2023

PROGAR submission to Children's Commissioner for England Family Review 26th May 2022

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’S written submission re: Cm 9525 The Government’s Response to an incompatibility in the Human Fertilisation & Embryology Act 2008 - 9th 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

• 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.