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Where am I now? Lawlink > Law Reform Commission > Publications > 9. Creating and Keeping IVF Records
Discussion Paper 15 (1987) - Artificial Conception: In Vitro Fertilization
9. Creating and Keeping IVF Records
I. INTRODUCTION
9.1 In relation to creating and keeping records of IVF and ET practice the following questions are significant:
- should information which identifies a party to IVF be made available to another person without the first party’s consent?
- by whom should IVF records by kept?
A consideration of these questions discloses two streams of thought. On the one hand, there are those who hold that a gamete donor’s claim to anonymity and a recipient couple’s claim to decide what to tell their IVF child should have effect. On the other hand there are those who are of the view that the welfare of the IVF child includes an overriding claim and entitlement to all information regarding the child’s genetic origins. In this context, expressions such as “IVF child” refer to all persons born following the IVF procedure no matter what their age.
II. ACCESS TO IVF RECORDS
A. Non-Identifying Information
9.2 We preface our remarks upon the matter of access to information contained in IVF records by noting that under existing legal procedures and the law of evidence, access to any records may normally be ordered by the courts for the purposes of legal proceedings. We see no reason to interfere with this. The question to be answered is whether legal rights should be created in favour of any person such that he or she may have access to recorded information about the parties to IVF.
9.3 With regard to information that does not identify a person, that is to say where the anonymity of parties to IVF is not affected, we see no reason to prevent access to information by persons with a “sufficient interest”. Access to certain non-identifying information contained in the IVF records might be justified for proper research purposes. For example, the National Perinatal Statistics Unit Report, which acts as a national monitor of IVF activity, is compiled from non-identifying information supplied by IVF clinics throughout Australia. In our report Human Artificial Insemination we recommended that recorded non-identifying information may be divulged by the record keeper to any person showing “good cause” to have such information.1 We envisage bodies such as the National Perinatal Statistics Unit being able to satisfy the “good cause” requirement, as would the parties to IVF. “Good cause” should encompass the health and welfare of the parties to IVF.
B. Identifying Information
1. The Issue
9.4 The Commission is well aware that infertility is likely to be a matter of considerable sensitivity for those affected by it. The ability to beget children is closely tied to an individual’s feeling of self respect and sexual identity. The fact that recourse must be had to medical treatment to complete a process which is normally intimate and private may be a cause of embarrassment and damage to self-esteem. If information of such a sensitive and private nature is to be incorporated into institutional and official records, the question of access to those records is necessarily controversial.
9.5 When donated gametes are used in the conception of an IVF child there may be a conflict between a gamete donor’s expressed wish for anonymity and the IVF child’s wish to learn his or her genetic origins. Should access to identifying information be granted in such an instance? This question would not arise when the IVF child is conceived using the gametes of the infertile couple. In this Part, we will examine · number of different circumstances.
2. “The Most Common Situation”
9. 6 In “the most common situation” the IVF child will know its genetic parents. The question of access to recorded information about the child’s genetic background will not arise. Whether the IVF child knows or should know the mode of his or her conception will depend upon the nature of the family relationship. While we are agreed that, in principle, openness and honesty in family relationships are desirable, it is, in our view, not justifiable to create a statutory compulsion to such effect. As we said in our report Human Artificial Insemination:
... parents may be honest and open with their children and yet decide that it is not in the children’s best interests to be given all information regarding their origins.2
Counselling may be of some value to the couple when they are deciding whether to tell their child the truth about its conception. In our opinion the decision should be that of the parents.
3. IVF Using Donor Sperm
9.7 When an IVF procedure involves the use of donor sperm then, for the purposes of this present debate, it may be equated with a procedure of AID. The child is borne by its genetic mother under an arrangement to which the social father is a willing party from conception. The semen donor is normally not known to the IVF couple.
9.8 The central issue in such a circumstance is whether the IVF child should have a legal right to access to information identifying the semen donor.3 Supporters of the view that IVF children should have the right to be informed of their genealogical roots draw a parallel with current trends in adoption law in England4, Victoria5 and, most recently, New Zealand.6 Typically, the new adoption legislation provides a legal right for an adopted person, upon reaching majority, to have access to identifying information about his or her biological parents which may be of an “identifying” nature.
9.9 However, there are significant differences between an adopted child and a child born following IVF using donor sperm. The IVF child will always know the biological identity and family history of his or her mother. The semen donor’s part in the child’s conception has been remote and lacking in physical contact; the social father, on the other hand, has in the typical case been psychologically, emotionally and actively involved in the child’s conception.
9.10 Evidence from adoption practice regarding the advisability of full disclosure of an adopted child’s genetic origins is mixed. It is assumed by those in favour that the acquisition of accurate genetic information about parenthood is of such importance that legislation to underwrite it is necessary. Yet, it is far from clear that psychological distress inevitably follows from lack of knowledge about the identity of a biological parent, or that divulging the parent’s identity will alleviate this distress:
It may be that disclosing the identity of the birth parents - the proposed “cure” - creates additional problems for the children, in relating to both their adoptive and biological families, that will prove just as intractable as the initial psychological distress of not knowing who the birth parents are.7
9.11 As we have already said, honesty and openness in family relationships are desirable attributes. However, it is not justifiable in our view to use this proposition as the sole basis for the enactment of legislation. Other factors must be considered, not least the autonomy and liberty of competent adult parents to make their own decisions in relation to family matters.
9.12 Further, the interests of the semen donor who wishes to preserve his anonymity should be considered. Although the “status of children” legislation would safeguard the semen donor from the legal responsibilities of parenthood, he may not wish his identity to be made known to the other parties to IVF. There is some evidence that a failure to provide anonymity may discourage men from donating semen.8
9.13 We acknowledge that the best interests of the IVF child must be of paramount concern in decisions which affect the welfare and upbringing of that child. Obviously, when the various Australian statutes, both federal and state, dealing with the status of artificially conceived children were enacted as recently as 1983-1985, it was considered to be in the best interests of a child born following the use of donated gametes to be presumed to be the child of its social parent. It may be that at a future time this perception of the best interests of the child will alter. The trend in adoption practice in a small number of jurisdictions, for example Sweden, New Zealand and the state of Victoria seems to be towards supplying a child with all recorded information regarding its genetic parents. However, the typical IVF child does not stand in the same relationship to its social parents as the adopted child and perceptions of what is best for the child vary greatly.
4. IVF Using Donor Ova
9.14 In this rare situation, the IVF child will be brought up by its genetic father and gestational (but not genetic) mother. The identity of the ovum donor is not necessarily known to the couple. Should the child have access to records identifying its genetic mother? Similar considerations would apply in this case as apply to the child born following use of donated semen. In fact, this case is one step further removed from the adoption analogy since both ovum donor and gestational mother have made vital contributions to the birth of the child. The lack of knowledge of the relative significance of “chromosomal” and “pregnancy” contributions and the inability of social scientists and others to predict the effects each will have on the child may give rise to the view that it is without justification to assert that the “facts” must be legislatively and compulsorily available and supplied in the name of “honesty and openness”. On the other hand, it may be argued that disclosure is important not because of the physical effect of any genetic contribution to the child, but because of the psychological effect on a child of being deceived as to his or her origins.
5. IVF Using Donor Sperm and Ova
9.15 This situation is even more uncommon. The facts are however closer to those of adoption and surrogate motherhood with a donated IVF conceptus in that neither of the “social” parents is genetically related to the child, but the analogy ends there. The “social” mother is also the gestational mother and has gone through an entire pregnancy and has given birth to the child. She has, therefore, a biological link with the child which may, in itself, be very significant. Both “social” parents have been emotionally and actively involved in the child’s conception, whereas the donors’ contributions have been on a remote level with the presumption of donor anonymity applying. It may be anomalous to permit children conceived of two donated gametes a right to identifying information while denying such a right to children conceived of one donated gamete. We bear in mind the information contained in the National Perinatal Statistics Report (1987) that of 1510 IVF pregnancies, only one involved the use of donated embryos and five the use of donated ova.9 These facts, together with the foregoing considerations, may offer little justification for the enactment of legislation at all, let alone the expensive and far reaching provisions that would be necessary. This kind of case will also be considered in our project on surrogate motherhood.
III. CREATING AND KEEPING IVF RECORDS
A. General
9.16 In our report Human Artificial Insemination, we recommended that information about the parties to AI should be retained. The principal purpose of retaining such information should be “to secure the good health and welfare of parties to AI”.10
9.17 In New South Wales, there is no direct statutory requirement compelling the creation of medical records, although a practitioner would probably be considered to be acting contrary to good medical practice by failing to create and keep records. There are however a number of non-legislative declarations of the necessity of keeping detailed and accurate medical records. The Code of Ethics of the Australian Medical Association states:
Every patient has a right to expect a complete and thorough examination into his condition and that accurate records will be kept.11
9.18 In the context of IVF, the National Health and Medical Research Council’s guidelines relating to the practice of IVF provide that a register should be kept by every IVF clinic containing details of every attempt made to secure a pregnancy by these means. Information to be retained should include:
... details of parentage, the medical aspects of treatment cycles, and a record of success or failure with:
(i) ovum recovery;
(ii) fertilization;
(iii) cleavage;
(iv) embryo transfer; and
(v) pregnancy outcome.12
The New South Wales Department of Health has directed that all IVF clinics in the state comply with the NHMRC guidelines,13 as has the Fertility Society of Australia on a national basis.14
9.19 In our report Human Artificial Insemination we recommended:
- All clinical records relating to AI and AID and to the parties to AI and AID should be retained; and
- The extent of the records, and their contents and the methods used to preserve anonymity, should not be prescribed in a statute but are matters for good medical practice.15
The issue for determination in relation to the creation and retention of IVF records is whether it is necessary to impose a legal duty to create and keep records or whether the non-legislative requirements already in force are adequate to ensure that the duty is respected.
B. The Record Keeper
9.20 To date, all IVF records are maintained and kept by the IVF units themselves. There has been no suggestion that the procedures followed by the units in relation to keeping relevant information and maintaining confidentiality are inadequate. In 1985, a NHMRC audit of all IVF centres then operating in Australia found:
[a]ll centres kept detailed clinical and laboratory records of procedures and provided summaries of results to the National Perinatal Statistics Unit and the Fertility Society of Australia.16
The records included information on the fate of every ovum taken from every IVF patient.
9.21 The proposal has been made that information regarding the parties to IVF should be stored in a central register. The Victorian Committee recommended the establishment of such a register in the following terms:
In view of the strong interest of the child, the Committee has decided that comprehensive information about donors whose gametes are successfully used in an IVF programme shall be maintained in a registry established and controlled by the Health Commission. Each hospital... shall maintain its own register of all donors whose gametes are used, and shall transmit regularly to the Health Commission details of the pregnancies resulting from the successful use of donor gametes.17
One advantage of a central register is that all recorded information regarding the parties to IVF would be readily available.
9.22 Some of the disadvantages of a central register are as follows:
- The register would involve a duplication of records already kept and would be both labour-intensive and expensive to set up and maintain.18
- It could involve infringement of personal privacy and civil liberties:
Such records or registers will give the state quantities of intimate personal information about citizens that is unique and will override any desire for privacy and anonymity on the part of the persons whose particulars are recorded.19
- There may be concern about whether the confidentiality of information contained in the register is assured. Without such assurances, gamete donors may be unwilling to proceed with donation.20
- The state would have the formal responsibility for recording the genetic makeup of children.21
C. Duration of Record Retention
9.23 All IVF clinics in New South Wales retain recorded information indefinitely, thought here is no formal requirement that they should do so. In our view, there should be no fixed time limit for retention of records. Recorded information should be kept indefinitely, but a procedure could be provided whereby a record keeper may apply for permission or authority to dispose of records or transfer them to an acceptable custodian. Permission to discontinue storage could be granted by a body nominated by the Minister of Health.
D. Record Keepers’ Duty to Inform
9.24 The re may be circumstances where a genetic or transmissible defect or disease in a donor or IVF child becomes known to an IVF record keeper. Should the record keeper be placed under a legal obligation to seek out and advise those parties to IVF whose health may be at risk?
9.25 In our report Human Artificial Insemination, we concluded that no action should be taken to create or impose by legislation an obligation or duty on the part of the record keeper to advise parties to the relevant procedure (in that case, AI) that their health may be at risk.22 Our reasons were as follows:
- taking a thorough and accurate history of a donor would reveal and eliminate most risks;
- notification of the donor would not benefit the artificially conceived child;
- we were satisfied that any clinic or medical practitioner made aware of a risk or danger of this kind would normally take steps to advise the person at risk. However, every case should be governed by its facts. The nature of the risk and the disease, and the sensitivity of the information should be considered when deciding whether notification is desirable. Legislation would be too blunt an instrument to achieve a satisfactory result.
The same principles would be of application to IVF when donor gametes are used.
E. Retrospectivity of Legislation
9.26 In the event that legislation is enacted creating a right of access to recorded information concerning the parties, a question arises about the retrospective operation of such legislation. Should the law apply to records created in the past and still in existence, or should it apply only to records created in the future? If legislation only permits access to non-identifying information, we see no reason why such legislation should not apply to existing as well as future records. However, as we said in relation to Al, with information of an identifying nature, difficult questions could arise about arrangements and understandings that may have been made at the time when the records were created.23
9.27 As we have already noted, extensive and detailed records of information relating to the parties to IVF have been created by all IVF clinics in response to directives from the NHMRC and the Fertility Society of Australia. Parliament has power to enact legislation with retrospective effect if it chooses, and modern statutes often contain specific provisions allowing for the prospective and retrospective operation of other provisions within the legislation. Hence, in order to achieve certainty, it may be desirable for some legislative statement to be made with regard to the operation of laws dealing with access to recorded information whether or not the information is already recorded.
IV. ISSUES FOR REFORM
A. Access to IVF Records
1. Should legal rights be created in favour of any person to have access to recorded non-identifying information about the parties to IVF?
2. Should legal rights be created in favour of any person to have access to recorded identifying information about the parties to IVF?
B. Creating and Keeping IVF Records
3. Should information be compulsorily recorded and kept about the parties to IVF?
4. If so, what information should be kept?
5. By whom should records be kept?
6. How long should records be kept?
7. Should a person or organisation who holds records be placed under a statutory obligation to supply to a person information that suggests that the person’s health is at risk?
8. Should information already in existence be subject to claims for access?
Footnotes
1. AI Report at para 13.23.
2. Id at para 13.9.
3. Id at Chp 13 throughout.
4. Adoption Act 1976 (UK).
5. Adoption Act 1984 (Vic); see also E Learner “Social Issues Common to Adoption and the New Reproductive Technologies” (1986) 11(4) Australian Journal of Early Childhood 37.
6. Adult Adoption Information Act 1985 (NZ).
7 J F Hollinger “From Coitus to Commerce : Legal and Social consequences of Non Coital Reproduction” [1985] 18 Journal of Law Reform 865 at 923.
8. See eg “Swedes’ sperm bank screwed up” Australian Doctor February 1986; “Medical Milestones” Sydney Morning Herald 17 February 1986 at 28. Cf Family Law Council Report, at para 6.3.9
9. National Perinatal Statistics Unit Report (1987) at 24, tables 17, 18.
10. Note 1 at para 13.24.
11. Australian Medical Association Code of Ethics (1984) at para 6.1.2.
12. NHMRC Ethics in Medical Research (1983) Supplementary Note 4, Principle (1) at 26.
13. New South Wales Department of Health Policy Statement: In Vitro Fertilisation (December 1985).
14. Fertility Society of Australia, “Programme Standards for in vitro fertilisation units in Australia” (1985) 3 Clinical Reproduction and Fertility 349.
15. Note 1 at para 13.28.
16. IVF Audit Report at 3.
17. Victorian Report (1983) at para 3.32.
18. J Lumley “The proposed Victorian Donor Gamete Register” (1986) 4 Clinical Reproduction and Fertility 39 at 43.
19. AI Discussion Paper at para 12.20.
20. Note 18 at 40.
21. C Corns “The Infertility (Medical Procedures) Act 1984: A New Dimension of Legal Regulation?” (1986) 21(3) Australian Journal of Social Issues 213 at 218.
22. Note 1 at para 13.32.
23. Note 19 at para 14.2.
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