BASW’s Project Group on Assisted Reproduction (Progar)

Co-Chairs
Dr Marilyn Crawshaw
Professor Eric Blyth

Progar membership
Dr Marilyn Crawshaw, BASW and UK DonorLink
Professor Eric Blyth, BASW
Julia Feast, BAAF, London
Ann Haigh, NAGALRO
Jennifer Hunt, IVF Hammersmith, Hammersmith Hospital, London
Gerry McCluskey, British Infertility Counselling Association representative
Olivia Montuschi, Donor Conception Network
Dr Jennifer Speirs, BASW, Edinburgh
Helen Thomson, CAFCASS
Professor Olga van den Akker, School of Health & Social Sciences Middlesex University

BASW’s involvement in issues related to infertility 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 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 Donor Conception Network (the UK’s largest support group for families built using donor conception, that provides information and support for parents, children and donors), the British Infertility Counselling Association (BICA), the British Association for Adoption and Fostering, the National Association of Guardians ad Litem and Reporting Officers (NAGALRO), the Children and Family Court Advisory and Support Service (CAFCASS), UK DonorLink (the UK’s voluntary contact register for donor conception), and individual researchers and practitioners. In the past links have been made with Barnardo’s and the Children’s Society. During its existence PROGAR has been actively engaged in the following key areas:

• Contributing to government 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 also contributed to practice and policy development in other jurisdictions (Australia, Canada, Hong Kong and New Zealand). Representatives of the Department of Health 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 on issues relating to family building using assisted conception where there is genetic difference between parent(s) and children, and would continue to work with and support BICA in the task of supporting the need for care for people with fertility problems.

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.

Contribution to government 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)

Contribution to parliamentary consultations
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
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)

Contribution to HFEA consultations (Click on Publications and Resources above to access these documents)
Sex selection: Choice and responsibility in human reproduction (written evidence 2002-2003)
Sperm, Egg and Embryo Donation (SEED) consultation (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)

Contribution to Nuffield Council on Bioethics consultation
Give and take? Human bodies in medicine and research (written evidence 2010)

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.)
• 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 2008i IFSW World Congress (International policy on cross border reproductive services.)

Ending the legal protection of donor anonymity in the UK
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)
• protection of the rights of donors involved in donor procedures undertaken before 1991 and their families
• the rights of the children 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 the HFEA code number of their child’s donor and their biographical, non-identifying informationadequate counselling and intermediary services for individuals genetically related through donor conception.

Eric Blyth: February 2012