Chair

PROGAR membership

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.

At the same 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).

During its existence 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.

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. [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

Eric Blyth: June 2012, updated December 2013 and 2018 by Marilyn Crawshaw