Access to genetic and birth origins information for people conceived following third party assisted conception in the United Kingdom

in The International Journal of Children's Rights
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In the United Kingdom, four distinct time periods may be identified during which differentiated information about their genetic origins may be available to a donor-conceived person. In addition, an individual conceived as the result of a surrogacy arrangement and who is also subject to a subsequent Parental Order may access differentiated information relating to the surrogacy arrangement dependent on which of the UK nations the Parental Order was made in. This paper outlines the historical, legal and social context of these provisions and identifies continuing issues for debate and possible further regulatory and legislative reform.

Access to genetic and birth origins information for people conceived following third party assisted conception in the United Kingdom

in The International Journal of Children's Rights

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References

AbdallaH.ShenfieldF.LatarcheE.‘Statutory information for the children born of oocyte donation in the UK: What will they be told in 2008?’Human Reproduction13 (1998) 11061109.

AdairV.PurdieA.‘Donor insemination programmes with personal donors: Issues of secrecy’Human Reproduction11 (1996) 25582563.

BlearsH.Speech at HFEA Annual Conference 28 January (2003). http://www.dh.gov.uk/en/News/Speeches/Speecheslist/DH_4031642

BlythE.‘Section 30: The acceptable face of surrogacy?’Journal of Social Welfare and Family Law4 (1993) 248260.

BlythE.‘‘I wanted to be interesting. I wanted to be able to say “I’ve done something interesting with my life”’’: Interviews with surrogate mothers in BritainJournal of Reproductive and Infant Psychology12 (1994) 189198.

BlythE.‘‘Not a primrose path’: Commissioning parents’ experiences of surrogacy arrangements in Britain’Journal of Reproductive and Infant Psychology13(3/4) (1995) 185196.

BlythE.‘Parental orders and identity registration: One country three systems’Journal of Social Welfare and Family Law32(4) (2010) 345352.

BlythE.CrawshawM.van den AkkerO.‘Disclosing donor information: A new code of silence?’BioNews498 (2009) 9 March. http://www.bionews.org.uk/page_38058.asp

BlythE.FrithL.‘Donor-conceived people’s access to genetic and biographical history: An analysis of provisions in different jurisdictions permitting disclosure of donor identity’International Journal of Law Policy and the Family23 (2009) 192210.

BlythE.FrithL.JonesC.‘The role of birth certificates in relation to access to biographical and genetic history in donor conception’International Journal of Children's Rights17(2) (2009) 207233.

BlythE.HuntJ.‘Sharing genetic origins information in donor assisted conception: Views from licensed centres on HFEA donor information form (91) 4’Human Reproduction13 (1998) 32743277.

BlythE.RyllI.‘Why wouldn’t you tell? Telling donor-conceived children about their conception’Health Ethics Today15(1) (2005) 4.  http://www.ualberta.ca/BIOETHICS/Vol.15%20No1%20-%202005.pdf

BrazierM.CampbellA.GolombokS.Surrogacy. Review for Health Ministers of Current Arrangements for Payments and Regulation. Report of the Review Team Cm 4068. (London: HMSO1998).

BrewaeysA.‘Donor insemination: The impact on family and child development’Journal of Psychosomatic and Obstetric Gynaecology17 (1996) 113.

BrewaeysA.‘Parent-child relationships and child development in donor insemination families’Human Reproduction Update7 (2001) 3846.

BrewaeysA.GolombokS.NaaktgeborenN.‘Donor insemination: Dutch parents’ opinions about confidentiality and donor anonymity and the emotional adjustment of their children’Human Reproduction12 (1997) 15911597.

BrewaeysA.de BruynJ.HelmerhorstF.M.‘Dutch donor insemination practice in transition’Human Reproduction8(Suppl 1) (2003) xviii.

BrewaeysA.de BruynJ.LouweL.‘Anonymous or identity-registered sperm donors? A study of Dutch recipients’ choices’Human Reproduction20 (2005) 820824.

British Medical AssociationChanging Conceptions of Motherhood. The Practice of Surrogacy in Britain (London: BMA Publications1996).

CookR.GolombokS.BishA.‘Disclosure of donor insemination: Parental attitudes’American Journal of Orthopsychiatry65 (1995) 549559.

Council of EuropeConvention for the Protection of Human Rights and Fundamental Freedoms (Strasbourg: Council of Europe1950).  http://conventions.coe.int/treaty/en/Treaties/Html/005.htm

CrawshawM.BlythE.DanielsK.‘Past semen donors’ views about the use of a voluntary contact register’Reproductive BioMedicine Online14(4) (2007) 411417.

CrawshawM.MarshallL.‘Practice experiences of running UK DonorLink, a voluntary information exchange and contact register for adults related through donor conception’Human Fertility11(4) (2008) 231237.

DanielsK.BlythE.CrawshawM.‘Previous semen donors and their views regarding the sharing of information with offspring’Human Reproduction20 (2005) 16701675.

Department of HealthProviding Information about Sperm Egg and Embryo Donors: Consultation Document (London: Department of Health2001).  http://www.dh.gov.uk/assetRoot/04/01/87/74/04018774.pdf

Department of HealthDonor Information: Providing Information about Gamete or Embryo Donors: Responses to Consultation (London: Department of Health2003).  http://www.dh.gov.uk/assetRoot/04/07/18/43/04071843.pdf

Department of HealthReview of the Human Fertilisation and Embryology Act A Public Consultation (London: Department of Health2005).  http://www.dh.gov.uk/assetRoot/04/11/78/72/04117872.pdf

Department of HealthResponses to the Consultation on the Review of the Human Fertilisation and Embryology Act (London: Department of Health2006a). http://www.dh.gov.uk/en/Consultations/Responsestoconsultations/DH_4132358

Department of HealthReview of the Human Fertilisation and Embryology Act: Proposals for Revised Legislation (Including Establishment of the Regulatory Authority for Tissue and Embryos) Cm 6989. (London: Department of Health2006b).  http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_073098

Department of HealthGovernment Response to the Report from the Joint Committee on the Human Tissue and Embryos (Draft) Bill Cm 7209. (London: Department of Health2007). http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/dh_079127

Department of HealthLiberating the NHS: Report of the Arm's-length Bodies Review (London: Department of Health2010).  http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/@ps/documents/digitalasset/dh_117832.pdf

Department of Health and Social SecurityReport of the Committee of Inquiry into Human Fertilisation and Embryology (The Warnock Report) Cm. 9314. (London: HMSO1984).

Donor Conception Support Group of Australia Inc. Let the Offspring Speak: Discussions on Donor Conception (Georges Hall: New South Wales, Donor Conception Support Group of Australia Inc. 1997).

FreemanT.JadvaV.KramerW.‘Gamete donation: Parents’ experiences of searching for their child’s donor siblings and donor’Human Reproduction24 (2009) 505516.

FrithL.BlythE.FarrandA.‘UK gamete donors’ reflections on the removal of anonymity: Implications for recruitment’Human Reproduction22 (2007) 16751680.

GolombokS.CookR.BishA.‘Families created by the new reproductive technologies: Quality of parenting and social and emotional development of the children’Child Development66 (1995) 285298.

GolombokS.BrewaeysA.CookR.‘The European study of assisted conception families: Family functioning and child development’Human Reproduction11 (1996) 23242331.

GolombokS.BrewaeysA.GiavazziM.T.‘The European study of assisted reproduction families: The transition to adolescence’Human Reproduction17 (2002a) 830840.

GolombokS.MacCallumF.GoodmanE.‘Families with children conceived by donor insemination: A follow up at age twelve’Child Development73 (2002) 952968.

GolombokS.MurrayC.JadvaV.‘Non-genetic and non-gestational parenthood: Consequences for parent–child relationships and the psychological well-being of mothers, fathers and children at age 3’Human Reproduction21 (2006) 19181924.

GottliebC.LalosO.LindbladF.‘Disclosure of donor insemination to the child: The impact of Swedish legislation on couples’ attitudes’Human Reproduction15 (2000) 20522056.

Human Fertilisation and Embryology AuthorityAnnual Report (London: Human Fertilisation and Embryology Authority1992).

Human Fertilisation and Embryology AuthorityCode of Practice (5th edn). (London: Human Fertilisation and Embryology Authority2001).

Human Fertilisation and Embryology AuthorityDisclosure of Information Relating to Gamete Donation CH(04)07. 28 October. (London: Human Fertilisation and Embryology Authority2004). http://www.hfea.gov.uk/2675.html

Human Fertilisation and Embryology AuthorityTomorrow's Children: Report of the Policy Review of Welfare of the Child Assessments in Licensed Assisted Conception Treatment (London: Human Fertilisation and Embryology Authority2005a).  http://www.hfea.gov.uk/cps/rde/xbcr/SID-3F57D79B-0FA672DF/hfea/TomorrowsChildren.pdf

Human Fertilisation and Embryology AuthorityNew Guidance on Welfare of the Child Assessments (London: Human Fertilisation and Embryology Authority2005b).  http://www.hfea.gov.uk/cps/rde/xbcr/SID-3F57D79B-0FA672DF/hfea/Revised_Guidance.pdf

Human Fertilisation and Embryology AuthorityCode of Practice (7th edn). (London: Human Fertilisation and Embryology Authority2007). http://cop.hfea.gov.uk/cop/pdf/COP.pdf

Human Fertilisation and Embryology Authority Opening the Register Policy – A Principled Approach TRIM reference: 2008/07083. (London: Human Fertilisation and Embryology Authority 2008a) http://www.hfea.gov.uk/docs/Item_9_-_Opening_the_Register_(485).pdf

Human Fertilisation and Embryology AuthorityCode of Practice (8th edn). (London: Human Fertilisation and Embryology Authority2008b).  http://www.hfea.gov.uk/docs/complete_CoP8.pdf

Human Fertilisation and Embryology AuthorityDisclosure of Donor Codes CH(09)02 19 March. (London: Human Fertilisation and Embryology Authority2009a).  http://www.hfea.gov.uk/1836.html

Human Fertilisation and Embryology AuthorityHFEA Decision Regarding the Disclosure of Donor Codes 20 March. (London: Human Fertilisation and Embryology Authority2009b). http://www.hfea.gov.uk/2059.html

Human Fertilisation and Embryology AuthorityDisclosure of Donor Codes to Gamete and Embryo Recipients: Evaluation and Review of HFEA Policy (London: Human Fertilisation and Embryology Authority2009c). http://www.hfea.gov.uk/docs/AM_Item_10_Jan09.pdf

Human Fertilisation and Embryology AuthorityDonation Review – Update and Early Options [HFEA (07/07/10) 561] 7 July. (London: Human Fertilisation and Embryology Authority2010a).  http://www.hfea.gov.uk/docs/2010-07-07_Authority_papers_-_complete.pdf

Human Fertilisation and Embryology AuthorityDisclosure of Donor Codes CH (10)06. 30 July. (London: Human Fertilisation and Embryology Authority2010b).  http://www.hfea.gov.uk/6020.html

Human Fertilisation and Embryology AuthorityF-2010-00184 - Legal Advice on Disclosure of Donor Codes 23 August. (London: Human Fertilisation and Embryology Authority2010c). http://www.hfea.gov.uk/6074.html

Human Fertilisation and Embryology Authority (Disclosure of Donor Information) Regulations 2004. Statutory Instrument 2004 No. 1511 http://www.opsi.gov.uk/si/si2004/20041511.htm

HunterM.Salter-LingN.GloverL.‘Donor insemination: Telling children about their origins’Child Psychology and Psychiatry Review5 (2000) 157163.

JadvaV.MurrayC.LycettE.‘Surrogacy: The experiences of surrogate mothers’Human Reproduction18 (2003) 21962204.

JonesC.Why Donor Insemination Requires Developments in Family Law: The Need for New Definitions of Parenthood (New York: Edwin Mellen Press2007).

KirkmanM.‘Parents’ contributions to the narrative identity of offspring of donor-assisted conception’Social Science and Medicine57 (2003) 22292242.

LalosA.GottliebC.LalosO.‘Legislated right for donor-insemination children to know their genetic origin: A study of parental thinking’Human Reproduction22 (2007) 17591768.

Leeb-LundbergS.KjellbergS.SydsjöG.‘Helping parents to tell their children about the use of donor insemination (di) and determining their opinions about open-identity sperm donors’Acta Obstetrica et Gynecologica Scandinavia85 (2006) 7881.

LorbachC.Experiences of Donor Conception: Parents Offspring and Donors through the Years (London: Jessica Kingsley Publishers2003).

LycettE.DanielsK.CursonR.‘Offspring created as a result of donor insemination: A study of family relationships, child adjustment, and disclosure’Fertility and Sterility82 (2004) 172179.

LycettE.DanielsK.CursonR.‘School-aged children of donor insemination: A study of parents’ disclosure patterns’Human Reproduction20 (2005) 810819.

MacCallumF.LycettE.MurrayC.‘Surrogacy: The experience of commissioning couples’Human Reproduction18 (2003) 13341342.

MacleanS.MacleanM.‘Keeping secrets in assisted reproduction – the tension between donor anonymity and the need of the child for information’Child and Family Law Quarterly8 (1996) 243251.

McWhinnieA.Families Following Assisted Conception: What Do We Tell Our Child? (Dundee: Dundee University Department of Social Work1996).

MilsomI.BergmanP.‘A study of parental attitudes after donor insemination’Acta Obstetrica et Gynecologica Scandinavia61 (1982) 125128.

MontuschiO.MerricksW.‘Why children need to know’. Presentation at PROGRESS/ESHRE Conference on Gamete Privacy: Should Egg and Sperm Donors Be Anonymous? (London 4 December 2000).

MurrayC.GolombokS.‘To tell or not to tell: The decision-making process of egg donation’Human Fertility6 (2003) 8995.

NachtigallR.D.TschannJ.M.QuirogaS.S.‘Stigma disclosure, family functioning among parents of children conceived through donor insemination’Fertility and Sterility68 (1997) 8389.

NachtigallR.D.BeckerG.Szkupinski QuigoraS.‘The disclosure decision: Concerns and issues of parents of children conceived through donor insemination’American Journal of Obstetrics and Gynecology178 (1998) 11651170.

NovaesS.‘The medical management of donor insemination’. In Donor Insemination: International Social Science Perspectives. eds. DanielsK.R.HaimesE.(Cambridge: Cambridge University Press1998).

The Parental Orders (Human Fertilisation and Embryology) (Scotland) Regulations 1994. Statutory Instrument 1994 No. 2804 (S.141) http://www.opsi.gov.uk/si/si1994/Uksi_19942804_en_1.htm

The Parental Orders (Human Fertilisation and Embryology) Regulations 1994 Statutory Instrument 1994 No. 2767 http://www.opsi.gov.uk/si/si1994/Uksi_19942767_en_1.htm

Rose and Another versus Secretary of State for Health and Human Fertilisation and Embryology Authority (2002) EWHC 1593 [2003] 2 FLR 962.

Royal College of Obstetricians and GynaecologistsDonor Insemination (London: Royal College of Obstetricians and Gynaecologists1987).

RumballA.AdairV.‘Telling the story: Parents’ scripts for donor offspring’Human Reproduction14 (1999) 13921399.

ScheibJ.E.RiordanM.RubinS.‘Choosing identity-release sperm donors: The parents’ perspective 13 to 18 years later’Human Reproduction18 (2003) 11151127.

ScheibJ.E.RiordanM.RubinS.‘Adolescents with open-identity sperm donors: Reports from 12–17 year olds’Human Reproduction20 (2004) 239252.

Science and Technology CommitteeHuman Reproductive Technologies and the Law. Fifth Report of Session 2004–05. Vol I. (London: House of Commons2005).  http://www.publications.parliament.uk/pa/cm200405/cmselect/cmsctech/7/7i.pdf

SnowdenR.MitchellG.D.SnowdenE.M.Artificial Reproduction: A Social Investigation (London: George Allen and Unwin1983).

Söderström-AnttilaV.SälevaaraM.SuikkariA.M.‘Increasing openness in oocyte donation families regarding disclosure over 15 years’Human Reproduction (2010) Advance Access 2 August doi:10.1093/humrep/deq194

United Nations Committee on the Rights of the ChildConsideration of Reports Submitted by States Parties Under Article 44 of the Convention: Concluding Observations: United Kingdom of Great Britain and Northern IrelandCRC/C/15/Add.188. 9 October. (Geneva: United Nations2002).

van BerkelD.van der VeenL.KimmelI.‘Differences in the attitudes of couples whose children were conceived through artificial insemination by donor in 1980 and in 1996’Fertility and Sterility71 (1999) 226231.

van den AkkerO.B.A.‘A survey of the functions and responsibilities of organisations dealing with surrogate motherhood’Human Fertility1 (1998) 1013.

WincottE.CrawshawM.‘From a social issue to policy: Social work’s advocacy for the rights of donor conceived people to genetic origins information in the United Kingdom’Social Work in Health Care43(2/3) (2006) 5372.

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