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Where am I now? Lawlink > Law Reform Commission > Publications > Chapter 13 - Duties of AID Record Keepers
Discussion Paper 11 (1984) - Artificial Conception: Human Artificial Insemination
Chapter 13 - Duties of AID Record Keepers
I. OBSERVATIONS
A. General
13.1 We suggested in Chapter 12 that there may be no good reason for the creation, in favour of the parties to AID, or the AID child, of statutory rights of access to recorded identifying information about any other party. However, we suggested that such rights could be envisaged in relation to non-identifying information The extent of the right in each case would vary, depending upon the party concerned.
B. Extent of Duty
13.2 Assuming that laws were enacted where by rights to non-identifying information were created, a question arises relating to the supply of information. This question concerns not so much supply under a duty correlative to the right (a duty that would obviously exist), as supply under an independent obligation to provide certain kinds of information. If a principal purpose of creating a right in favour of an AID child or a semen donor to information is to attend to the physical health of that person, what should the law say to a record keeper who acquires information that discloses a risk or danger to the health of a party to AID? Should the record keeper be placed under a legal duty to pass on the information to the person who may be affected? A case that springs to mind is the birth of an AID child who exhibits an abnormality or a characteristic that may relate to the biological father and suggests that he (the father) may be at some risk, or that others of his children may be at risk. The converse of this would be the unexpected development in a donor of a disease that could also develop in his children. We have been advised that the incidence of abnormalities in AID children in New South Wales is not higher and is probably lower than in normally conceived children.1 There is no evidence of increased risk of fetal abnormality with frozen semen, and it has been suggested that this is related to the selection process of donors.2
13.3 We have investigated the possibility of diseases or defects being inherited by AID children through donor sperm, and whether such event is likely to occur to a degree that calls for special statutory attention. We have received expert advice suggesting that special statutory attention will not be needed, provided that AID is to be a form of medical practice. Obviously concern about such serious events derives from the thought that in a normal household their occurrence and significance would immediately be known to the other parties who may be affected, whereas with AID there will be no such communication unless a record exists enabling it to occur, and unless somebody passes on the information.
II. GENETICIST’S ADVICE
13.4 In October 1983 the Advisory Committee on Human Artificial Insemination sought the advice of a noted geneticist, Dr. G. Turner of The Prince of Wales Children’s Hospital, on this subject. Dr. Turner confirmed that there are very few conditions or diseases that could be inherited through sperm which would not be revealed by taking a history of the donor in the normal medical way. In other words, provided that an accurate history (which would include family information) of the donor is taken, the prospect of the unexpected happening, of events of the kind mentioned in paragraph 13.2 is remote. Dr. Turner’s advice was put as follows:
In considering the genetic situations where it would be of benefit to be able to identify the father of a child conceived by artificial insemination, there are really two considerations:-
Genetic significance to the offspring - The only relatively commonly encountered genetic counselling situation where this would be significant would be in Huntington’s chorea, where the parent of the donor or the donor himself might develop Huntington’s chorea and therefore the child be at 50-50 risk, and this might be of importance for him to know. As most of your donors will be relatively intelligent, and will also have a fairly good idea of their background, this is pretty unlikely as most individuals with Huntington’s chorea have a positive family history, fresh mutations being extremely rare. So it is rather more a theoretical situation rather than a practical one.
Where this information would be useful in terms of genetic counselling for the donor. This might occur in some dominantly inherited conditions which can have very mild expression ranging to fairly severe expression eg. Tuberous sclerosis where you can have an individual who is essentially normal, but may have some intracranial calcification, but who can have a child who has severe epilepsy, and intellectual handicap. There are quite a number of entities in which the parent is only recognised as being affected after giving birth to an affected child who is affected to a much greater degree. The other situation where it might benefit the donor is where you have a child who is born with multiple congenital abnormalities is found to have an unbalanced translocation and in whom the father is then found to have a balanced translocation, so putting future pregnancies at risk. The likelihood of this situation would be very small as balanced translocations are usually inherited through a mother and the frequency of unbalanced translocations is the order of 2/1000. So this situation might occur in something of the order of 1:50,000 AI’s performed. Therefore, on summary there might be some benefit to the donor in maintaining records, but practically no benefit to the child, when considering this in genetic terms.
The only other situation where it would be of benefit to be able to make contact with your relatives is in a tissue transplant situation i.e. - if the child conceived by artificial insemination developed leukaemia or end stage renal failure, then should the donor have produced other children, there would be half-sibs available for tissue typing for transplant compatibility.3
13.5 It seems from Dr. Turner’s advice that the likelihood of an unexpected disease developing in an AID child or donor is low. This still leaves open a number of questions beginning with whether records should be kept to enable communications to be made if the rare case did occur. Further questions are as follows:
- If records should be kept, is it acceptable for them to be kept by the AID clinic or practitioner?
- If the rare case does occur should the party at risk be told?
- If so, should a statutory duty be placed upon the record-keeper to pass on the information?
III. OUR APPROACH
A. Maintenance of AID Records
13.6 We have already expressed the view that records should be brought into existence and kept, in relation to the parties to AID. We would expect these records, which will include identifying information about donor and child, to be kept in the manner that each clinic decides is best. Decisions about coding, confidentiality, separation of some records from others, and so some are best left to the Organisation or person concerned. We see no reason to establish official or government registers to deal with the present matters.
B. Duty to Advise of Risk
13.7 In principle, a party who is at risk should be told. However, we are inclined to think that it would be undesirable for the law to lay down inflexible requirements to this effect. The decisions that would have to be made are peculiarly and essentially for the medical profession, and must carry the discretionary power to determine what to say, when to say it, and even whether to say it. Every case will be governed by its own facts. The desirable role of the law, in our view, Would be to provide no more than a general requirement to keep enough records and acquire enough information to enable the clinic to act, if circumstances require it, in the health interests of the parties. The law could also impose upon AID clinics and practitioners a duty to have regard to the health of semen donors and AID children because these parties to AID will not always be their patients as recipients will be. In view of the advice referred to earlier in this Chapter it seems that the destruction of identifying records as envisaged in paragraphs 12.30 and 12.32(9) could be justified without contradicting the propositions in this present paragraph.
IV. ISSUES FOR REFORM
13.8 The following issues for reform relate to persons and organisations who create or hold records relating to the parties of AID:
(1) Should a person or Organisation who holds such records be placed under a statutory obligation to supply unilaterally, information that is acquired that suggests that a person’s health is at risk? If such an obligation is created, should it apply to existing records (ie. Be retrospective)?
(2) Accepting that disease can be inherited through sperm, is it possible or likely that a disease or condition could be inherited by an AID child through donor sperm which would not be revealed or suggested by a normal medical history of the donor?
(3) Are there other persons in addition to the AID child (for example the donor and other children or future children of the donor) whose health interests would be served by receipt of information of the kind described in (1) above?
(4) If the likelihood described in (2) above is low, should records nevertheless be created and kept so that appropriate communications may be made to persons whose health interests require it? (In considering this question, it is relevant to bear in mind that the existence of records offers the only practicable means of enabling communication in the future).
(5) In a case of the kind envisaged in (2) above, should the person at risk be told?
(6) If so, should a statutory duty be placed upon the record keeper to pass on the information?
(7) Would the destruction of identifying records about semen donors as envisaged in paragraphs 12.30 and 12.32(9) raise special difficulties in the resolution of these issues?
Footnotes
1. D.N. Joyce, “Artificial Insemination by donor” (1979) 13(5) International Planned Parenthood Foundation (IPPF) Medical Bulletin 2: J. Leeton and J. Backwel, “A priminary psychosocial follow-up of parents and their children conceived by artificial insemination by donor” (1982) 1 Clinical Reproduction and Fertility 307, at p.309; R.J. Pepperell et al. (eds.), The Infertile Couple (1980) p.199; and C. Woodetal. (eds.). Artificial Insemination by Donor (1980), pp.77-78.
2. See D.N. Joyce, note 1 above, p.1.
3. Letter to a member of the Advisory Committee on Human Artificial Insemination, from Dr. G. Turner dated 12 August 1983.
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