R (Rose and Another) v Secretary of State for Health and Another
| Jurisdiction | England & Wales |
| Judge | Mr Justice Scott Baker,MR JUSTICE SCOTT BAKER |
| Judgment Date | 26 July 2002 |
| Neutral Citation | [2002] EWHC 1593 (Admin) |
| Docket Number | Case No: CO/3802/01 |
| Court | Queen's Bench Division (Administrative Court) |
| Date | 26 July 2002 |
[2002] EWHC 1593 (Admin)
IN THE HIGH COURT OF JUSTICE
QUEEN'S BENCH DIVISION
ADMINISTRATIVE COURT
The Honourable Mr Justice Scott Baker
Case No: CO/3802/01
Ms Monica Carss-Frisk Q.C and Mr Tom De La Mare (instructed by Liberty) for the Claimants
Mr Nigel Giffin (instructed by Solicitor, Department of Health) for the First Defendant
Ms Dinah Rose (instructed by Morgan Cole) for the Second Defendant
This case concerns the rights of children born as a result of artificial insemination by donor ('A.I.D.'). There are two Claimants, Joanna Rose, an adult and EM who is a child represented by her mother as litigation friend. Their cases are being conducted by Liberty not only on their behalf but also on behalf of many others who have similar concerns to find out information about their biological parents.
Joanna Rose was born in Reading in 1972, long before the Human Fertilisation and Embryology Act 1990 ("the 1990 Act") and indeed well before the Warnock Committee on Human Fertilisation and Embryology whose report in 1984 led to the 1990 Act. At the time of her conception more or less complete secrecy was the order of the day but attitudes have changed a great deal during her lifetime. Fertility services were provided to her mother by Dr Boyd from his Harley Street practice and she has an older brother, Adam, who was born in 1966. He too is an A.I.D. child and was conceived as a result of fertility services at the same clinic albeit with sperm, it is believed, from a different donor.
EM was born on 18 January 1996. Her mother had previously been treated for 13 months at St James's University Hospital, Leeds. She is now six years old. All that is known of the donor is that he is six feet two inches tall, of medium build, has dark hair and hazel eyes and has an A positive blood group.
Ms Rose lives in Brisbane, Australia. She has dual citizenship. She is single and has no children. For six months she worked full time at Link-up, an organisation working for indigenous Australians that reunites and supports children born to indigenous families, separated from those families and placed with white adopted parents or in institutions. She was struck by the similarity of identity issues in their cases with those in her own. She obtained a bachelor of social science degree in human services and then turned to a bachelor of arts honours course in applied ethics. She is currently completing a thesis on the problems and ethics in relation to donor conceived adults and hopes to follow this with a PhD in the same field.
She discovered she was born as a result of donor insemination when she was about seven years old. The circumstances were distressing and are covered in her evidence. It is unnecessary for me to repeat them in this judgment. She was sworn to secrecy and felt grief, confusion and guilt. The issue became suppressed until adulthood. From about the mid 1980s first her family and then Ms Rose herself made persistent and determined efforts to obtain from Dr Boyd, and then from his son who took over possession of his records, non-identifying information about the donor. This yielded nothing and the present position is that there is no longer any information available. Any records that there were have been destroyed.
Ms Rose pursued other avenues. She met by chance in Sydney a woman who turned out also to be an A.I.D. child from Dr Boyd's clinic. They thought for a time that they might be half sisters but tests showed this to be improbable. Another contact was one of the sperm donors to Dr Boyd's clinic, Dr Beeney. He was very helpful in trying to obtain information from Dr Boyd's practice but again to no avail. Eventually Ms Rose was told that the records had been destroyed. Tests showed that Dr Beeney could not be Ms Rose's father.
Ms Rose says that in all of her searches one of the things that has concerned her is that she does not know to whom she is genetically related. At the time she was conceived there were no regulatory controls on the number of times any one donor's sperm could be used to conceive children. Ms Rose describes the importance of the information to her in the following terms:
"I feel that these genetic connections are very important to me, socially, emotionally, medically, and even spiritually. I believe it to be no exaggeration that non-identifying information will assist me in forming a fuller sense of self or identity and answer questions that I have been asking for a long time. I am angry that it has been assumed that this would not be the case, and can see no responsible logic for this (given the usual pre-eminence accorded to the rights and welfare of the child), unless it is believed that if we are created artificially we will not have the natural need to know to whom we are related. I feel intense grief and loss, for the fact that I do not know my genetic father and his family. There is no closure for me, as I assume these people are not dead. In addition there is no comfort for this, as there is little social recognition of this significance or grief. I live with the uncertainty of a reunion being possible, though unlikely, and of even unknowingly passing my biological father or siblings in the street. I wonder if we would recognise each other. I wonder if they think of me, and if they do how and where there would communicate this.
Lack of knowledge and openness also forces me into unhappy or inappropriate pigeon holes. I have been using my social father's medical history as a child (even though it has no conceivable relevance to me), and, if it were not for my parents' honesty, I would have been led to do so for the rest of my life. I am fortunate that my parents were as honest with me as they were, even if what they told was very traumatic for me. I feel that this lack of information is potentially very dangerous. Someone who is conceived through donor insemination should, I believe, live their life according to accurate genetic information about themselves (e.g. about genetic propensity to certain illnesses, heart disease, birth defects in children conceived with certain genetic characteristics etc). This information needs to be provided throughout the course of their life and should be regularly updated as new information is discovered. Such dangerous mis-information is re-enforced by birth certificates which do not reflect someone's true genetic identity.
With the revelation of my donor conception I am now unable to complete medical history forms whenever I have to complete them. I do not know about half of my ethnicity or racial identity. In addition this will not just affect me. If I have children then I will only have half of my genetic and hereditary roots to pass on to my offspring. Clearly the establishment of a retrospective register, and the safe keeping of my records, is something that I am compelled to seek.
As mentioned above, I find the fact that I do not have this missing genealogical picture very distressing. I have had counselling to deal with some of these feelings and feel that I am now ready for information to be provided to me. Without this information these feelings of distress and inequality will not go away. The need to discover this information has become a central feature of my life, along with the need for recognition for this. I need to find out more about my medical, genealogical and social heritage. Other people who come from families, where they have known both of their natural parents are able to discover this through the process of time. This includes information about their background and religion, where certain of their talents and skills may come from (e.g. parents or relations with musical or artistic skills), why they look the way they do etc. I have a strong need to discover what most people take for granted. While I was conceived to heal the pain of others (i.e. my parents' inability to conceive children naturally), I do not feel that these are sufficient attempts to heal my pain."
She then continues to describe the effect on her family, home and private life. I have no reason to doubt the genuineness of her feelings or her statement that she is part of a growing tide of donor conceived adults who feel they have suffered damage from the current arrangements, both from the secrecy and from having large gaps in their self knowledge.
The position of EM is different. In the first place she was born some years after the 1990 Act came into force. It took nine attempts for her mother to become pregnant and a different donor was used on each occasion. A fertility nurse told her mother that they would do their best to match her husband's physical characteristics, but beyond giving this information to the hospital she had no role in the selection of the donors.
During her pregnancy EM's mother contacted the hospital seeking information about the donor and was given the information to which I have already referred, plus the fact that the donor was alive. No further information has been supplied either by the hospital, the Human Fertilisation and Embryology Authority ('H.F.E.A.') or anyone else.
Ever since EM was born, her parents have been open and honest with her about her background and have told her she was created using donor sperm. She constantly asks questions and is very curious. She has a life story book designed by former members of the donor conception network. This explains how donor insemination works and why it exists. EM's...
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