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Cordelia Thomas[*]
Successful pre-implantation genetic diagnosis (PGD) to avoid creating a child affected by a genetically-based disorder was reported initially in 1989.[1] Since then PGD has been used to biopsy and analyse embryos created through in vitro fertilisation (IVF) to avoid implanting an embryo affected by a mutation or chromosomal abnormality associated with serious illness.[2] PGD is widely accepted for the purpose of avoiding serious illness in the child, although there have been suggestions that such procedures have the effect of de-valuing persons in the community with disabilities. It reduces the chance that the parents will be faced with a difficult decision of whether to terminate the pregnancy if the disorder is detected during the course of gestation.
PGD potentially has other more controversial purposes, such as the selection of the sex of the baby for personal preferences, rather than to avoid a sex-linked disorder.[3] In the future, PGD might be employed to test for mere susceptibility to a disease which may never actually eventuate or for late-onset disorders such as Alzheimer’s disease. These developments would bring ethical difficulties because such children could enjoy many years of normal health before symptoms arise, by which time science may have discovered a treatment.[4]
Recently there has been an increased use of PGD to create a donor child who is Human Leukocyte Antigen (HLA) matched with a sibling in need of stem cell transplant. [5] PGD to create a donor is not merely one technology, but involves three distinct technologies: IVF, PGD for HLA matching (sometimes combined with PGD to rule out the harmful mutation causing illness in the sibling), and stem cell transplant. An IVF clinic in Chicago has announced that pre-implantation genetic diagnosis of 199 eight-celled embryos has resulted in the birth of five “saviour siblings”.[6] Dr Yuri Verlinsky stated tissue from the babies will be used for treatment of siblings with acute lymphoid leukaemia, acute myeloid leukaemia or Diamond-Blackfam anaemia. Of the five babies, only one had actually saved a sibling. The others were in preparation for transplantation or in remission, although they may require stem cell transplants in the future. A total of 199 embryos were tested for the nine couples in thirteen clinical cycles. Twenty-eight HLA- matched embryos were transferred in twelve clinical cycles resulting in five pregnancies and the birth of five HLA- matched children.[7] Verlinsky justifies the ethical quandary of creating babies to serve as medical treatments for other children on the grounds that PGD offers the opportunity to save the life of an existing child and allows couples to avoid prenatal diagnosis for antigen typing in mid-pregnancy, with selective abortion of foetuses that are poorly matched with the affected child.
In Australia, ‘Sydney IVF’[8] is the clinic with most experience with PGD. They have been performing PGD since 1997 and have had more than 140[9] babies born from embryos that have been screened, plus a number of confirmed pregnancies. They are proposing a trial of PGD with IVF to increase the success rates of IVF. As at least one third of pre-implantation embryos have an abnormal number and/or arrangement of chromosomes and these embryos will not result in a normal pregnancy. The aim is to improve on the success rate of IVF by selectively transferring only those embryos that are chromosomally normal.[10] Success rates of IVF vary depending on the age and level of fertility of the woman and the live birth rate per cycle varies from 20 percent to 42 percent depending on the age of the woman. After the age of 40 years, the rate drops to around four percent. For any particular couple, PGD may involve months of time, multiple drugs, invasive procedures and a strong determination to persist with the process.[11]
An HLA-matched child may potentially be required to be a donor of tissues and organs throughout life. The initial cord blood donation could fail for any of several reasons such as inadequate cord blood cell dose, graft failure after cord blood transplant, or the recipient child experiencing a recurrence of the original illness after transplant. [12] If the cord blood transplant fails, the next step is bone marrow harvest and transplant. This too might not succeed or the original illness might recur, requiring another bone marrow transplant. Additionally, once an HLA-matched donor is created, there is potential to require further tissues other than bone marrow. After a bone marrow transplant, toxicities related to chemotherapy and irradiation, or immunosuppressive drugs, could produce organ failure involving the kidneys, liver, or other organs.[13]
Such on-going demands would not differ from the situation of an HLA-matched child who was fortuitously conceived by natural means. As such the issue is not PGD, but rather whether to harvest bone marrow or a solid organ from a child. This raises the question of whether there should be limits and procedures to protect such children from exploitation until they achieve sufficient competence to be able to make mature and autonomous decisions about whether to donate, even if the consequence may in some cases be that it is too late to save the sibling.
This paper considers the ethical and legal issues arising from PGD. It explores the issues of consent to donation of bone marrow or organs by children and proposes guidelines to protect the interests of the donor child. It is accepted that bone marrow donation is both ethically and legally distinct from the donation of organs, however both involve bodily intrusion and the use of a child as a means to assist another. The extent to which these issues raise public concern will depend on the frequency of the utilisation of PGD and the increasing range of potential uses of the technology. The main practical disadvantage of PGD is its relatively low success rate in terms of live births, although over time with improvements in IVF technology this is likely to improve. Additionally, as mutations are identified for a greater number of genetic conditions the number of couples for whom PGD is a viable option will increase.[14]
Both PGD and IVF involve the creation of excess embryos. Those that do not HLA-match the existing child are likely to be destroyed, donated to another couple or used for research. Although some people view destruction as morally problematic it is none-the-less already an effect of the widespread use of IVF to treat infertility. In Quintavalle v Human Fertilisation and Embryology Authority, Lord Phillips MR stated:
It is a commonplace practice in one IVF cycle to create several embryos. One is then implanted. The others are stored ready for implantation in a later cycle if a further attempt to achieve pregnancy is needed. If however a pregnancy results and there is no wish for a further pregnancy, the other embryos are allowed to perish. This is so even though there is no reason to suspect any abnormalities in them....It seems to me that the creation of embryos with the knowledge that some perfectly healthy embryos will deliberately be allowed to perish was not regarded by Parliament as always unacceptable. [15]
Some people see a distinction between PGD that is intended to avoid a serious genetic defect in the embryo and a situation where the condition suffered by the existing child is non-heritable and so the procedures are being employed purely for the benefit of the existing child. As Mance L J stated in Quintavalle v Human Fertilisation and Embryology Authority:
The differences between the testing of embryonic cells for abnormality and for tissue typing lies in the precise aspects of the genetic makeup tested and in the factors taken into account when deciding whether to implant. In the one case, it may be said, the procedures are with a view to ensuring the health of the child to be or of future generations, while in the other they are to promote the health of a sibling and the general welfare of the existing family. [16]
A further issue is the safety accuracy and effectiveness of the process. PGD has technical difficulties related to the small amount of DNA from only one or two cells available for testing, and so there is potential for misdiagnosis. There are also questions about the long-term health consequences of PGD and IVF for both mother and the child. There are risks from the hormones used to stimulate ovulation and the procedure can result in an ectopic pregnancy. As usually more than one embryo is implanted there is a heightened risk of a multiple birth, with risks both to mother and foetus. It is still unclear whether cell biopsy could harm the embryo and the development of the child.[17] Yerlinski states the children born at his clinic as a result of preimplantation HLA matching are, at approximately one year of age, healthy and comparable to other children born after preimplantation diagnosis procedures.[18]
Although it could be argued these procedures fall within the procreative liberty of the parents and so should be unregulated, such is the vulnerability of the donor child that it is suggested that it is necessary to have adequate procedures to safeguard the child. If the resultant procedures extend only to use of the cord blood the ethical issues are less contentious than intrusive procedures performed on the child, although knowledge of the circumstances may still affect the child’s sense of self-worth or identity and may have profound effects on the child’s relationship with siblings. By contrast, the procedure may be of benefit to the donor child in that it will be cherished because of the saviour status and may have an enhanced relationship with the sibling recipient. Some commentators would dismiss such concerns because they argue a child conceived using PGD to be an HLA-matched donor has not been harmed because the child is better off being conceived this way than not being conceived at all (in that existence is better than non-existence).[19]
Although ‘slippery slope’ arguments are speculative at best, it is conceivable that parents who have undergone the invasive processes necessary to produce the HLA-matching child may see bone marrow donation as just a small step further and view a repetition in a similar fashion. In their desperation to save the ill child they may find it difficult to ‘cry halt’ so long as medical science still offers additional potential procedures. The concept of autonomy that has gained considerable force in western bioethics is problematic when considering the situation of a child who may not be able to exercise such autonomy.
Although a small numbers of children have been used as organ donors since the earliest days of organ transplantation, their use is ‘ethically complex’.[20] There appears to be an increasing reluctance world-wide to use minors as solid organ donors and they are not used for solid organ transplants of organs other than kidneys. In 1987, research in the United States found that forty four out of seventy four renal centres would consider using a donor below the age of eighteen and twenty would consider donors below sixteen years but by 1996 a similar study found that only 24 percent would consider using a minor donor and of these twenty one of
thirty five centres would require the donor to be at least 16 years of age.[21]
The Australian Law Reform Commission[22] recommended the law draw a distinction between regenerative tissues and non-regenerative tissues in relation to minors. In the case of regenerative tissues, it recommended that removal from or donation by a living person who is below the age of 18 should be lawful only if certain conditions are fulfilled. The first is that the person from whom the tissue is to be removed is of sound mind and agrees to such removal. The second is that a parent consents in writing to such removal. The third is that independent medical advice is given by a qualified medical practitioner who takes no part in the transplantation of the tissue involved to the effect that such medical practitioner has discussed the proposal to remove such tissue with the person from whom it is proposed to be removed.
In the case of non-regenerative tissues it recommended that as a general rule removal from or donation by a living person below the age of 18 years should be prohibited by law. Two members of the Commission[23] would allow no exception to this rule, believing that the existence of an exception would impose unacceptable pressures upon siblings or other relatives that are avoided if the law prohibits donation in every case. The Commission was unanimously of the opinion that removal from or donation by a living person below the age of 18 years of non-regenerative tissue for the purpose of transplantation should be lawful only when the following circumstances occur:
| • | the donor and the recipient are members of the same (immediate) family; |
| • | there is independent medical evidence that the potential recipient is in danger of dying if the transplant of such tissue does not occur; |
| • | there is medical advice regarding the nature and effect of the removal and the nature and effect of the transplantation; |
| • | the parents of the donor consent in writing to such removal; |
| • | the donor has sufficient mental capacity and agrees to such removal; |
| • | an ad hoc committee of three independent persons appointed by the Minister, comprising a judge and two others, one of whom shall be a qualified medical practitioner, and the other either a social worker or a psychologist, shall have considered all the available facts in such manner as they shall determine, and shall have decided unanimously that the proposed removal of tissue for such purpose is desirable, being in the interests of the donor, and ought to be permitted. |
The donation of a portion of the liver demonstrates the difficulty of such distinctions. Although the liver is regenerative, such donations are at present so risky they are not permitted from children.[24]
The World Health Organisation Guiding Principles on Organ Transplantation issued in 1991 stated ‘[n]o organ should be removed from the body of a living minor for the purposes of transplantation.’[25] The Law Reform Commission of Canada identified three potential objections to the use of minors as organ donors:
| • | consent is a prerequisite of all bodily intrusions; |
| • | a balancing of social worth is inevitably implicated in child donation; |
| • | donor benefit is illusory in that assessing benefit involves the weighing of the potential for harm against the potential psychological benefits. [26] |
From a Kantian non-consequentialist perspective, PGD infers the use of the child as a means to the ends of others. Further, if consent to bone marrow harvest or organ donation is given by parents on behalf of the child, the child may be compelled to donate even though competent adults cannot be similarly compelled. There is no general common law duty to rescue another, although Ross has suggested that there may be an ethical duty on children to undergo invasive procedures in certain circumstances to save the life of a sibling.[27] It has been argued that with respect to children a ‘familial’ or ‘relationship-based’ approach is more relevant than the traditional individualistic approach. Crouch and Elliott state ‘[w]hen it comes to moral decisions about the family, the tools of moral philosophy and the law have not always served us well, particularly when the question involves exposing one family member to risks for the sake of another’. [28]
In a survey of 4005 Americans by the Genetics and Public Policy Center at The Johns Hopkins University,[29] 61 percent approved of using PGD to select an embryo that could benefit an ailing sibling while 33 percent disapproved of its use. The report stated there is strong support for such technologies where there is a health benefit, even where that benefit is for another person, but the support co-exists with concern about where how the technology may develop. Eighty percent of the respondents were concerned that if reproductive genetics technologies were not regulated they could ‘get out of control’.
It is difficult to clearly determine that point in a child’s development at which the parents are no longer able to make health care decisions for the child and young person is able to decide for themselves. In one study of 120 children undergoing paediatric orthopaedic surgery the opinions of patients’ parents and health professionals were canvassed as to the age at which children could decide about non-life saving treatment. The children set the highest threshold at 14 years, the parents at 13.9 years and health professionals chose the lowest figure-10.3 years.[30]
The English Court of Appeal has expressed the test of competency for adults as, ‘a person lacks capacity if some impairment or disturbance of mental functioning renders the person unable to make a decision whether to consent to or refuse treatment. That inability to make a decision will occur when:
| (a) | The patient is unable to comprehend and retain the information which is material to the decision, especially as to the likely consequences of having, or not having, the treatment in question; |
| (b) | The patient is unable to use the information and weigh it in the balance as part of the process of arriving at the decision. [31] |
In New Zealand and in most Australian states, if the patient is under the age of 16 years they are presumed incompetent unless their competence meets the test in Gillick v West Norfolk and Wisbech A.H.A[32] or Re C.[33] These cases indicate a higher standard of capacity for children than for adults. In Re R (a Minor)(Wardship: Medical Treatment) Lord Donaldson MR stated Gillick competence requires: ‘not merely an ability to understand the nature of the proposed treatment...but a full understanding and appreciation of the consequences both of the treatment in terms of intended and possible side-effects and equally important, the anticipated consequences of a failure to treat.’[34] This suggests that the standard is higher than that required for adults, as many competent adult patients would struggle to comply with this standard.
Although there have been cases where the English courts have overridden a Gillick[35] competent young person’s refusal of treatment,[36] it is highly unlikely that any court would compel a young person to donate bone marrow contrary to the expressed refusal of the young person. Independent representation for the young person provides the opportunity to express such unwillingness removed from parental influence.
In England, the Court of Appeal held the Court’s inherent jurisdiction had to be exercised in the best interests of the child and as the child got older greater weight should be accorded to the wishes of the child. The Court made it clear that in determining whether to exercise its inherent power to override the young person it would be influenced by the seriousness of the results that continued refusal would have. It was stated as obiter in Re W [37] that these principles were equally applicable to organ and blood donation. Lord Donaldson stated it was a ‘highly improbable conclusion’ that a minor would be regarded as being sufficiently competent to be able to consent to ‘so serious a procedure’ as donation of a kidney.[38] However, he saw no difficulty with finding a minor competent to donate blood.
A child who is not Gillick competent will be presumed to be incapable of giving informed consent and surrogate decision-making is required. In the case of normal medical treatment of an incompetent child consent is sought from the parents and although the doctor will explain the procedures to the child, taking into account the limitations of the child’s ability to understand, the wishes of the child will not be determinative. This is acceptable because the treatment is intended to benefit the health of the child, but it may not be acceptable in the case of a procedure such as bone marrow donation, which is not therapeutic.
To decide whether participation in non-therapeutic medical procedures is in the child’s best interests is speculative at best. By definition, such participation is not undertaken to serve the health interests of the donor child. There are arguments that benefits may accrue of a non-medical nature such as the virtues of altruism and social obligation, or the benefit of having saved the life of a sibling. Whether such benefits can be said to outweigh the harms, risks and detriments depends on how each factor is weighed.
In Australia, the law on the competency of children is ‘somewhat uncertain.’[39] In New South Wales and South Australia, a minor's capacity to give informed consent to medical treatment is regulated by statute whereas in all other states it is a matter for the common law.[40] Section 49 of the New South Wales Minors (Property and Contracts) Act 1970 provides:
(2) Where medical treatment or dental treatment of a minor aged fourteen years or upwards is carried out with the prior consent of the minor, his or her consent has effect in relation to a claim by him or her for assault or battery in respect of anything done in the course of that treatment as if, at the time when the consent is given, he or she were aged twenty-one years or upwards.
Medical treatment means treatment by a medical practitioner in the course of the practice of medicine or surgery, or treatment by any person pursuant to directions given in the course of the practice of medicine or surgery by a medical practitioner. This provision is limited to claims for assault and battery and does not affect claims in negligence or false imprisonment. It does not remove the guardians’ powers to refuse consent to treatment.[41]
The South Australian legislation, the Consent to Medical Treatment and Palliative Care Act 1995, provides:
6. A person of or over 16 years of age may make decisions about his or her own medical treatment as validly and effectively as an adult.
12. A medical practitioner may administer medical treatment to a child if--
(a) the parent or guardian consents; or
(b) the child consents and-
| (i) | the medical practitioner who is to administer the treatment is of the opinion that the child is capable of understanding the nature, consequences and risks of the treatment and that the treatment is in the best interest of the child's health and well-being; and |
| (ii) | that opinion is supported by the written opinion of at least one other medical practitioner who personally examines the child before the treatment is commenced. |
The Family Court of Australia has wrestled with the issue of consent to medical procedures on minors. Sterilisation is the most common type of special medical procedure application but the requirement of court authorisation has not been limited to such cases. It has been called upon to decide applications concerning:
| • | surgical gender reassignment of a 14 year old with a congenital disorder;[42] |
| • | performance of cardiac surgery on an 11 year old boy where parental consent was refused; [43] |
| • | harvest of bone marrow blood cells from a physically and intellectually healthy 10 year old boy for transplant to the child's aunt who was suffering from leukaemia; [44] |
| • | procedures to begin the transition from female to male of a thirteen year old with a gender identity disorder.[45] |
In contrast to the law in New Zealand, in Australia the common law has been extensively modified by legislation regulating the transplantation of tissue or organs.[46] A child in this context is a person under eighteen years and apart from in Western Australia and Queensland, who is unmarried. All jurisdictions other than the Northern Territory provide for the removal of regenerative tissue from children but only for the purpose of transplantation into the body of a parent or sibling. In Western Australia, Tasmania and the Australian Capital Territory this is extended to include a relative. A parent of the child may consent, following medical advice about the nature and effect of the removal which must be given to, and understood by, both parent and child. Consent must be in writing and in all jurisdictions apart from South Australia and Western Australia, an accompanying certificate must be provided by a designated officer or medical practitioner, which must generally restate the terms of the consent and certify:
| • | that the required medical advice was given; |
| • | that consent was given in the presence of the certifying person; |
| • | the parent was of sound mind and freely gave the consent; |
| • | the child understood the nature and effect of the tissue removal and transplantation; and |
| • | the child was in agreement with the procedure. |
The tissue removal must not be performed by the medical practitioner who gave the certificate. In Queensland there is a further requirement of a 24 hour cooling-off period. If the child is too young to understand only Victoria and Queensland permit the removal of regenerative tissue, conditional on the certifying person stating that they are of the opinion that the recipient family member is in danger of dying without the transplant. In Queensland there is an additional requirement that it be certified that the risk to the donor child is minimal.
Only the Australian Capital Territory expressly provides for child donation of non-regenerative tissue. The recipient family member must be in danger of dying and both parents must consent to the procedure. The certificate containing these and the above requirements must be referred to a Ministerial Committee for decision. If there is only one parent available, it may still be referred to the Committee. All other jurisdictions forbid such donation, either expressly or impliedly. The common law position prevails in those jurisdictions that have no specific legislation, and in respect of those cases which do not fall within the statutory principles. In Re Marion[47] the majority of the court referred to the uncertainty which had existed in the common law in Australia as to whether minors can consent to medical treatment. Their Honours followed the decision of the House of Lords in Gillick v West Norfolk and Wisbech Area Health Authority,[48] the principle of which they expressed as:
A minor is, according to this principle, capable of giving informed consent when he or she achieves a sufficient understanding or intelligence to enable him or her to understand fully what is proposed. [49]
In Re GWW and CMW,[50] the parents of a ten year old child applied for an order authorising the performance of a bone marrow harvest to collect marrow cells or alternatively a peripheral blood collection to collect peripheral blood stems for donation to his aunt. The child had an understanding of the proposed procedure but the court held his depth of understanding was not such that he had the capacity to give an informed consent, and thus could not be said to be ‘Gillick competent.’ The child was made a party to the proceedings and was also separately represented, so that the court was directly appraised of the child’s instructions through his own solicitor, but also to ensure that the court received submissions which the child representative considered to be in the child’s best interests, even if contrary to the child’s wishes. The Court decided the psychological benefit to the child of permitting the harvesting of the cells outweighed the minimal risks and consequences of the procedures and therefore it was in his best interests to permit him to participate as a donor.
The child was the only fully matched related donor although a number of potential unrelated donors were identified on the Australian Bone Marrow Donor Registry. The aunt’s chance of a cure with an unrelated donor was 20-30% while the chance of survival with the child as the donor was 25-40%. The issues were whether the parents of the child could lawfully authorise the carrying out of the procedures and if not, whether it was in the best interests of the child for the court to intervene and exercise its welfare jurisdiction to authorise the carrying out of the procedures.
Hannon J stated it was necessary to consider whether this was a special case outside the scope of a parent's power to consent to on behalf of the child. Section 31(1)(d) of the Family Law Act 1975 confers on the Family Court jurisdiction with respect to ‘matters... with respect to which proceedings may be instituted in the Family Court under this Act or any other Act’. He referred to Re Marion,[51] where the majority stated that there are features involved in a decision to authorise sterilisation, which indicate that in order to ensure the best protection of the interests of a child such a decision should not come within the ordinary scope of parental power to consent to medical treatment. The court went on to state that court authorisation is required because of the significant risk of making the wrong decision and because the consequences of a wrong decision are particularly grave. Additionally, although a guardian may be statutorily authorised to act on behalf of an incompetent in some matters, an intrusion into the body of an incompetent to benefit another requires judicial approval because the operation was not for the child's own benefit but for the benefit of the third party. He stated:
In my opinion that is an important factor to take into account when the proposed procedure is invasive to the bodily integrity of a child of tender years and involves a surgical procedure although that procedure may be of less gravity than is involved in a sterilisation or an organ transplant. [52]
Section 67ZC(2) of the Family Law Act provides that in considering whether to make an order relating to the welfare of the child, a court must regard the best interests of the child as the paramount consideration. Section 68F(2) sets out the matters that the court must consider in determining what is in the child's best interests. The specific matters referred to in that section are not exhaustive in that paragraph (l) enables the court to have regard to any other fact or circumstance that it thinks is relevant. Paragraph (a) requires the court to consider any wishes expressed by the child and any factors, such as the child's maturity or level of understanding, which the court thinks are relevant to the weight it should give to the child's wishes. In H v W [53] the Full Court discussed the weight to be attached to the wishes of children and concluded that ‘recent social forces have indicated that more realistic weight should be attached to the wishes of the children than may have been the practical realities in years past.’[54]
A further relevant factor is whether there is a sufficiently close relationship between the child and the recipient, which is of benefit to the child. In such a case it is in the best interests of the child that the opportunity be given for the continuation of that relationship and this may be more significant than the risk or discomfort of a surgical procedure. Re GWW and CMW [55] is particularly significant in the context of PGD because it extended the welfare of the child to include the benefit of another person, a concept that will be readily applied to saviour siblings. In addition, it permitted donation to a member of the extended family in a case where potentially there was suitable adult donors available.
Re A[56] was a significantly different case. A had been born a genetic female with an extreme degree of masculinisation, due to an abnormality in the adrenal gland. A had genital reconstruction in her early years to give her a feminine appearance and was placed on a continuous regime of hormone treatment to prevent the production of any further male hormones by the adrenal gland. During her childhood, however, the recommended level of hormone treatment she received was inadequate. This led to the further production of male hormones and masculinisation of the external genitalia. At the time of the application to the Court A was 14 years of age. A felt, and the experts agreed, that she would be better as a male and that male gender re-assignment (including by way of surgery) would be appropriate. Mushin J held court authorisation was required because there would be biological, social and psychological consequences of the proposed intervention.
Most recently the Family Court considered Re Alex: Hormonal Treatment for Gender Identity Dysphoria.[57] A thirteen year old girl had been diagnosed as having a gender identity disorder and had a strong wish to become male in appearance. The issue was whether medical treatment involving the administration of hormonal therapies should be authorised. Nicholson CJ held the evidence did not establish Alex had the capacity to decide whether to consent to the proposed treatment. He stated: ‘It is one thing for a child or young person to have a general understanding of what is proposed and its effect but it is quite another to conclude that he/she has sufficient maturity to fully understand the grave nature and effects of the proposed treatment.’[58]
There was clear evidence that the proposed procedure was consistent with Alex's wishes and the expert evidence was that the treatment was in Alex’s best interests. Nicholson CJ stated that it is highly questionable whether a 13 year old could ever be regarded as having the capacity to consent to treatment that will result in change of sex, and this situation may well continue until the young person reaches maturity.[59]
The treatment plan fell within the category of cases that require court authorisation because there are significant risks from the treatment and the treatment was not to cure a disease or correct a malfunction. Nicholson CJ stated: ‘The categories of cases in which the welfare jurisdiction properly ought to be invoked are not closed...This observation is especially apt as the march of science overtakes the perimeters of the settled law.’[60]
Children have widely varying cognitive abilities and the concept of incapacity is to some extent culture specific. A total prohibition of the use of body parts or tissue from incompetent children has the advantage of certainty and ensures their legal protection, however such a ban fails to reflect their varying levels of competence and does not recognise that there are circumstances, as in Re GWW and CMW,[61] where the removal of a body part from a child may be justified to avoid psychological or familial damage. A flexible standard based on the maturity of the child, similar to that in Gillick[62] is appropriate, rather than the selection of a chronological age, although it may be feasible to set a minimum age for consent to donation. A competent child should be able to give an effective consent or refusal and although the concurrence of parents is desirable it should not be required. However if the decision is thought to be contrary to the welfare of the child an application to the Court may be made. The Australian procedure whereby the parens patriae jurisdiction is available to protect children in this area is highly desirable, as even after the child becomes Gillick[63] competent a reluctance to assist a critically ill sibling may result in emotional pressure from the family.
There is no legislation or case law directly on point although it appears bone marrow transplants from and between children take place without resort to approval by the court. Thus there is no independent consideration of the best interests of the donor. Minors that are Gillick competent may be able to consent to harvesting and transplantation without the need for a Court declaration and free from parental powers and responsibility. The court could override the competent child’s refusal to donate[64] but such a decision is unlikely as section 11 of the New Zealand Bill of Rights Act 1990 provides that ‘everyone has the right to refuse to undergo any medical treatment.’
Section 3 of the New Zealand Bill of Rights Act 1990 confines the Act to acts done by the legislative executive or judicial branches of the Government of New Zealand or by any person or body in the performance of any public function power or duty conferred or imposed on that person or body by or pursuant to law. From this section it may be argued the Act does not apply to the relationship between a doctor in private practice and patient but would apply to the relationship between a patient and hospital (although not private hospitals). In Re J,[65] Ellis J stated ‘I accept that the Act applies to the actions of the Director–General, the police, and the doctors employed by Healthcare Hawkes Bay’. He did not go further to consider whether the rights would have a wider application. However Austin states:[66] ‘[u]ntil a New Zealand case arises directly on point it needs to be assumed for present purposes that the Bill of Rights Act applies to the relationship between doctors and patients and other relationships controlled by section 25 of the Guardianship Act 1968.’[67] Austin further opines: ‘[t]hough children should be accorded the protection of section 11 because they are people... a New Zealand court might be asked to articulate principles that would justify limiting the application of the right to children because they are children.’[68]Austin argues that children, even if mentally competent, should not have an unfettered right to make their own medical decisions.
The Health and Disability Commissioners Code of Health and Disability Services Consumer’s Rights[69] recognises in Right 7 the right to make an informed choice and give informed consent. It states in Right 7(2) “[e]very consumer must be presumed competent to make an informed choice and give informed consent unless there are reasonable grounds for believing that the consumer is not competent. Right 7(7) provides every consumer with the right to refuse services and to withdraw consent to services. The clear thrust of the Code is that people should, wherever possible, make health care decision for themselves.
In the United States the Supreme Court has demonstrated in several contexts an unwillingness to intervene in the decisions of parents regarding their children.[70] Spiritual exemptions from vaccinations exist in forty-eight states. Additionally, most states have spiritual exemptions from metabolic testing of newborns, ten states have exemptions from mandatory prophylactic eye drops and some states have exemptions from lead poisoning screening, physical examinations for school children and studying about disease.[71] Perhaps the most significant and controversial exemptions are those found in child abuse and neglect statutes. Thirty-nine states have religious exemptions in their civil codes and thirty-one in their criminal codes. Iowa and Ohio each provide a religious defence to manslaughter, Delaware and West Virginia provide a religious defence to murder of a child, Arkansas provides a religious defence to capital murder and Oregon provides a religious defence to homicide by abuse.
In a variety of cases[72] where children have died because parents refused treatment on religious grounds the parents have argued with some success that the language of the spiritual exemptions both misled the defendants into believing they could in good faith rely on spiritual healing and failed to advise them that should their spiritual healing methods be unsuccessful they could be liable for criminal charges beyond those provided in the child neglect statute itself.
The best interests test has been applied in the United States to a number of tissue donation cases. In Hart v Brown[73] both parents and two guardians ad litem agreed to the use of a seven-year-old girl as a kidney donor for her identical twin sister. The court permitted the transplantation as there was parental consent and a strong identification between the donor and her sister. The court believed the donor would be better off in a family that was happy than in a family that was distressed. Similar reasoning was applied in Little v Little[74] where a mentally incompetent fourteen year old donated a kidney, holding that ‘there is strong evidence to the effect that she will receive substantial psychological benefits from such participation.’[75] Best interests were interpreted to include both physical and psychological benefits.
In contrast, in the case of Curran v Bosze[76] the Court was asked to overrule the refusal by the mother of three year old twins to have them tested as potential bone marrow donors for their older half brother, who was their father’s child by a previous relationship. The twins had only met the prospective recipient twice and the father had left the family. The court declined to order the testing. It held that if there was to be any benefit in donation by children, it would necessarily involve a psychological benefit. This was not to extend to a benefit of altruism in an abstract theoretical sense and it was grounded in the fact that the donor and the recipient are known to each other as family. It held that only in the case of an existing relationship could a benefit realistically be found to exist.
Ferninand Schoeman argues[77] intimate relationships transcend the traditional moral boundaries which give rigid shape to the self and create instead an environment in which mutual purpose and group identity flourish. The family requires considerable privacy in order to develop this intimacy and so family autonomy should only be interfered with if it can be shown the family’s actions will cause the child serious harm. He argues this is because it serves to promote the family and the intimate child-parent relationship which is essential for the child to develop into a healthy moral agent. He opines that the State authorises parental authority that goes beyond promoting a particular child’s best interests to advance the family’s interests. ‘The family is to be thought of as an intimate arrangement having its own goals and purposes.’[78] Schoeman argues that it is morally acceptable for a parent to consent to the extraction of bone marrow from a healthy infant to donate to her ill twin sister whereas it would be unacceptable for the State to require a healthy infant to submit to this procedure. This is because ‘the state occupies a formal relationship with the child, [while] the parents occupy an intimate relationship.’[79]
The concept is expanded by Robert Veatch[80] who states intimate guardians ought to be held to a subjective best interests standard which allows them to look beyond the interests of the child concerned, to factor in the moral values, religious beliefs and social ideals of the family as well as the larger repercussions the decision is likely to have on both the patient and the family. However, is to be noted that in New Zealand and Australia, in cases involving parental refusal of medical treatment of children based on religious faith, the Courts have shown willingness to overrule the parental decisions.[81]
Lanie Friedman Ross[82] argues that ‘[v]iewed from the perspective of family autonomy, the decision to allow one child to donate an organ to a sibling can be morally permissible provided that there is an ongoing intimate (bonded) relationship between the authorizing parents and the child-donor.’ However, she would prescribe limits on family autonomy by stating that parents can permit their child to participate as an organ donor provided that they are not eliminating the child’s capacity to act autonomously and provided that they are promoting the child’s capacity to flourish in other ways. She suggests the state prohibit parents from allowing the child to be a donor if it finds the donation incompatible with respecting the child’s personhood. An interfamilial donation ‘enhances the child’s well-being by the benefit accrued to the family as a whole, even if his individual welfare is diminished by the transient discomfort. That is, if the organ is donated to another family member the child is advancing the family’s interests, which is a means to promoting the child’s own interests. The child is not then treated solely as a means.’[83]
In many areas of family life parents set the interests of one child against those of other children, or of the family unit. As it is generally in a child’s best interests to live in the family society allows the family flexibility in balancing the interests of family members. This would infer that the parents should be free to decide whether a child might donate to a sibling. In S v S; W v Official Solicitor[84] in determining the question of blood testing of children for paternity purposes, the House of Lords proposed a different type of welfare test. Lord Reid suggested that rather than applying a strict ‘best interests’ test, a ‘reasonable parent’ test was more appropriate. As such, the reasonable parent might choose to consider wider motives than the child’s physical protection, such as the public interest. As an alternative test, the court suggested that procedures could be allowed so long as they were not ‘clearly against the interests’ of the child.
Applying such an approach may be more practical in light of the need to balance the interests of all the children within a family, where decisions cannot always protect the physical welfare of each child equally. However, decisions to allow children to donate organs or tissue are ones that should be carefully monitored to ensure that the interests of the vulnerable participants are protected, especially as the range of possible procedures is expanding.
A Gillick competent young person may well be able to balance the relevant factors in deciding whether or not to donate bone marrow, such as the nature of the procedure, the chances of success of the transplantation and the ongoing consequences that may result, both for the donor and the recipient. The decision may be that the proposed donor prefers not to donate. In such a case to compel the young person to undergo treatment is not in the best interests of that child. In light of the Australian and New Zealand provisions considered above it is unlikely a dissenting child would be compelled to donate. However, parents may argue the child’s decision is based on factors such as a dislike of medical procedures and that as the child matures, the child will come to realise that the benefit of having saved a sibling outweighed the short-term discomfort and that the parents were right to decide on behalf of the child.
Mumford states that ‘[i]t is reported that few young siblings ever express reluctance or anxiety about the idea of donating bone marrow. However, the blood tests leading up to the procedure may be more distressing for the child and there may also be a strong component of family pressure on the prospective donor.’[85] Although a child who is not yet Gillick competent should assent to the procedure, or at least express no dissent, the interpretation of the reactions of young children is difficult. A child may cry or resist when subjected to a needle stick, but it is difficult to determine whether this can be interpreted as no more than normal childhood aversion to injections or resistance to the whole procedure.
Alternatively, the donor child may decide that even though the procedure is not in their medical best interests, such aspects are outweighed by the psychological and emotional factors involved. The decision by an adult whether to donate tissue or organs does not typically involve a rational weighing of costs against benefits but rather is made on an emotional basis. It then is arguably inappropriate to impose a decision that is the result of such weighing on a minor who is capable of formulating and expressing preferences. Thus the best interests’ standard in this context may result in a lack of respect for persons because it fails to allow minors to act altruistically. Rather, it permits decision-making by minors only when it is in their best interests. As stated by Rachel Dufault: [86]
Unfortunately, the best interests of the child standard, as it now exists, suffers from an additional flaw: it imposes self-seeking values upon children. It permits children to act only when it is in their best interest, thereby foreclosing the possibility of altruistic or humane behaviour. Such an impoverished vision of children based on net benefits fails to recognize the human element of childhood. Perhaps, then, what is most objectionable about the standard as it now exists is not that it imposes values on children, but that the values it imposes are the ‘wrong’ ones, i.e. they are too narrow. A better judicial approach to the best interests test would be one that nurtures altruistic tendencies and recognizes that children, as well as adults, enjoy giving for the sake of giving, and not just for some tangible reward.
Several studies have indicated benefits to donors. Fellner and Marshall studied adult kidney donors and found the psychosocial consequences of donating included increased self-esteem, growth as a person and satisfaction in the recovery of the recipient, as well as identification of the process as one of the most meaningful events in the donor’s life.[87] Bernstein and Simmons included a small number of adolescents in their study of kidney donors and found that the donors experienced gratitude from the recipients and the rest of the family and felt personal benefits from having saved the life of another. The adolescents experienced even greater increases in self esteem than the adults.[88] Freund and Siegel found a particular closeness in the relationship between many bone marrow donors and their sibling recipients following a transplant.[89] Robbennolt, Welsz and Lawson have suggested that the best interests’ standard should be revised to include as important factors the wishes of the child and the benefits of acting altruistically.[90]
However, in contrast, researchers at the University of California found that one third of children whose siblings were bone marrow recipients suffered from signs of post traumatic stress syndrome, whether or not they were the donor. The negative symptoms were worse in the donor children.[91] This could be largely a result of the trauma involved in a family health crisis, compounded by the effects of involvement in medical procedures, rather than donation per se.
Cara Cheyette states reliance on assumptions about the lack of risk and psychological benefits of donation are misleading.[92] Consequently she mounts a strong argument against donation by incompetent donors. She concludes that it is inequitable to protect the competent adult’s right to opt out of donation whilst permitting caregivers to volunteer children and the mentally disabled. She questions whether, in light of the research findings as to the adverse psychological affects that might result, the interests of the donor child are adequately protected.
Guidelines on the permissible use of PGD have been established in the United Kingdom by the Human Fertilisation and Embryology Authority (HFEA) and in Australia by the Victorian Infertility Treatment Authority (ITA).[93] In 2001 the HFEA found PGD to create a donor was acceptable within certain limits.[94] The HFEA subsequently approved the practice in one case involving Beta thalassemia (Hashmi), and disapproved it in another involving Diamond-Blackfan anaemia (Whitaker).[95] The reason for the difference in outcome was that in the Hashmi case part of the purpose of the testing was to avoid the birth of another child with the genetic condition, whereas in the Whitaker case the condition was non-heritable and so there was no potential medical benefit for the future child. The purpose was to produce HLA matched cord blood. The HFEA was guided by certain principles including:
| • | protecting the welfare of the future child; |
| • | respecting the future child as an end in itself rather than as purely as means to save another. However it may be impossible to ascertain whether the parents wish to conceive the second child "for its own sake" and not merely as a donor; |
| • | considering likely effects on the future child; |
| • | a child may not be conceived in order to perform a procedure that would be unethical if done to a child already born. Consequently the HFEA concluded that certain conditions should apply, including: |
| o | the sibling's condition should be severe or life-threatening |
| o | all other treatment options should have been explored |
| o | couples must undergo counselling |
| o | the demands on the donor child should be restricted to cord blood or bone marrow and so solid organ harvest is unacceptable.[96] |
Sheldon and Wilkinson suggest that the ethical arguments against allowing PGD in the Whitaker case are fallacious[97] and that even in the Hashmi case it was incorrect to argue the procedure was for the benefit of the embryo because it did not cure or remove a disorder. Instead it involved the choice of a “healthy” embryo. As such, the only benefit to the embryo was to be implanted rather than not to be implanted, and in that respect both cases are similar. They argue that if the HFEA were committed to the net benefit principle, it should ban all PGD and also IVF because both involve embryos being discarded. On that basis they argue it is unjustifiable to make a decision that could result in the death of the ill sibling[98] and state that ‘there is little doubt that the courts would sanction the far more invasive procedure of use of bone marrow to save Charlie Whitaker, were his saviour sibling already born.’[99]
On 21 July 2004, the HFEA issued a press release stating that it had decided to extend the rules allowing embryos to be tested to produce a HLA matched embryo. The process is not limited by the heritability of the condition suffered by the existing child. However the process must only be used if no donor can be located through tissue banks or cord blood banks. [100]
The ITA has similar policies to the previous policy of the HFEA.[101] Section 8(3) of the Infertility Act 1995 provides for the use of pre-implantation genetic diagnosis. It requires that before a woman undergoes a treatment procedure:
| (c) | a doctor who has specialist qualifications in human genetics, must be satisfied, from an examination that he or she has carried out, that if the woman became pregnant from any oocyte produced by her [and sperm produced by her husband], a genetic abnormality or disease might be transmitted to a person born as a result of the pregnancy. |
This would appear to exclude families such as the Whitaker family, where the procedure was not intended to prevent the transmission of the disorder.
The ITA policy has, as a key consideration, the motivation and level of understanding of the parent in seeking to have an additional child, while recognising the difficulty of identifying the motivation for the parents. The procedure is only available where the primary intended tissue recipient is a sibling. The policy provides that should another relative have a similar genetic condition, the parents of the child should decide about further donation of cord blood or bone marrow. As with the HFEA, the ITA reviews each application to use PGD to create a donor. The Authority additionally requires prior Institutional Ethics Committee approval. The ITA requires that the sibling's condition must be severe or life-threatening, other treatment options must have been explored, the parents must receive counselling and only umbilical cord blood or bone marrow harvest is acceptable, not solid organ harvest. The ITA states that the interests of the person to be born are paramount and that applications should be dealt with on a case by case basis.
Every harvesting procedure from the donor child that involves bodily invasion, such as bone marrow harvest (but obviously not the harvesting of umbilical cord blood), should be preceded by evaluation of the parents and donor child (when age appropriate) to assure that the parents are not exploiting the child or imposing psychological harm, that the child is adequately supported psychologically and medically and that the child does not object. However, the interpretation of the responses of a young child may be problematic. Most children dislike procedures such as injections yet the reaction could be assessed as either a temporary aversion or a generalised objection to involvement in the donation process. Parents wishing to assist a seriously ill sibling will doubtless tend to adopt the former interpretation. Consequently, the approval process is best conducted by an independent authority or court process, with the donor child having separate representation and an independent doctor who is separate from the transplant team.
Justifying PGD on the basis of psychological benefit to the donor child is a dubious approach as, with a very young child at least, it is difficult to anticipate whether such benefit will eventuate in the future as it will not exist at the time the cord blood is collected. If there is a requirement of a positive emotional relationship between donor and recipient, this precludes conceiving a child for the purpose of donation, because predicting such a relationship prior to birth, or in a neonate, is impossible. This suggests that neonates, who as yet have no emotional relationship of any substance with the sibling, should not serve as bone marrow donors. Donation would have to await the development of such a relationship, even if that was too late to save the sibling. This would be similar to the situation in Australia, other than in Victoria and Queensland, where the child must understand and assent to the procedure.
The child conceived as a donor is vulnerable to repeated lifelong testing and harvesting even though the long term medical and psychological consequences of such repeated procedures are unknown.[102] Once harvesting of the cord blood occurs, it is a small step to harvesting of bone marrow and then to even more intrusive procedures. However, it is likely parents in this situation would justify the process on the basis that they will love and care for the donor child, who will be valued for the benefit provided to the family above that of its existence alone. Consequently, this is an area in which it is suggested the parents have a conflict of interests and the decision-making process should not rest with them alone.
Traditionally, decisions involving children have been left to parental discretion with the courts intervening in some cases of parental refusal of medical treatment. In cases where the parents’ interests may run counter to those of the child such deference must be curtailed and the courts or an independent authority must determine whether it is the best interests of the child to proceed because the parents’ judgment may be affected by the exigencies of the situation. An appropriate independent authority could be a specialised ethics committee acting within legislative guidelines. The role of the court or independent authority should be to provide guidance to doctors and proxy decision makers (such as parents) as to the meaning of best interests and the factors to be taken into account when weighing the benefits and burdens of the proposed procedure. It is important to divorce this guidance from emotional reactions of those closely involved with the child and concentrate on a detached medical and psychological evaluation.[103] This is not to assume that the child will necessarily accept the judgment as to best interests. However, such separation may help the parents to divorce themselves from the decision-making process and so be better able to maintain a relationship with the child that will best allow them to support the child through the ensuing process.
The philosophical basis of such decision-making must be considered. Is it to be based on the best interests of the individual donor? This will involve a risk/benefit analysis in each case. Alternatively, the substituted judgment approach could be used to assess whether the donor would have consented if competent to do so. This will involve assumptions that as siblings commonly do consent to donation, this child would do so if competent. A further approach is to allow proxy decisions by parents or guardians if this is not against the best interests of the child. Best interests include the child’s mental, psychological and emotional well-being, as well as physical well-being. This would allow the proxy to consent to a wider range of interventions including some tissue donations but still prohibit non-renewable donations such as kidney donation.
Although such decisions are usually made within the family it cannot be said that families are necessarily protective or safe places for children. It is proposed that if a child is Gillick competent then the child must consent to any donation and the parents should not be able to overrule any refusal. If the parents believe the child’s consent is not in the best interests of that child they should be able to apply to the independent decision making authority, which could refuse authority to proceed. Children who are not Gillick competent should have the protection of independent decision-making in all cases. Their expressed reluctance to proceed should always be respected. Additionally, it is essential that the child be separately represented to ensure that the interests of the child are considered independently from the views of the parents.
The frequency of consideration of the ethical aspects of technologies such as PGD may increase with the extension of potential uses use of pre-implantation screening. If the cord blood from the new-born is used for donation, this is less ethically complex than if the intention is to transplant bone marrow or solid organs. PGD should be available in cases involving heritable and non-heritable conditions so long as there is adequate protection for the resulting child. It should be recognised that repeated donations are likely to be harmful and there should be a presumption that they are generally unacceptable.
[*]Senior Lecturer in Law, Massey University, Wellington Campus, New Zealand.[]
[1] A H Handyside, J K Pattison, R J Penketh, J D Delhanty, R M Winston, E G Tuddenham, ‘Biopsy of Human Preimplantation Embryos and Sexing by DNA Amplification’ (1989) Lancet 34749.
[2] American Society for Reproductive Medicine, ‘A Practice Committee Report: Preimplantation Genetic Diagnosis’ ( 2001) available at
<www.asrm.oeg/Media/Practice/preimplantation.pdf> (last accessed 12 June 2004).
[3] Ethics Committee of the American Society for Reproductive Medicine, ‘Sex Selection and Preimplantation Genetic Diagnosis’ (1999) 72 Fertility and Sterility 595. In Victoria, the Infertility Treatment Act 1995, s 50 prohibits the use of a gamete or embryo with the purpose of producing or attempting to produce a child of a particular sex, unless it is necessary for the child to be of a particular sex so as to avoid the risk of transmission of a genetic abnormality or a disease to the child.
[4] John A Robertson, ‘Extending Preimplantation Genetic Diagnosis: The Ethical Debate’ (2003) 18 Human Reproduction 465; Yury Verlinsky, Svetlana Rechitski, Oleg Verlinski, Christina Masciangelo, Kevin Lederer, Anver Kuliev, ‘Preimplantation Diagnosis for Early-Onset Alzheimer Disease Caused by V717L Mutation’ (2002) JAMA 287.
[5] F Shenfield, G Pennings, P Devroey, C Sureau, B Tarlatzis, J Cohen, ‘Taskforce 5: Preimplantation Genetic Diagnosis’ (2003) 18 Human Reproduction 649.
[6] Yuri Verlinsky, Svetlana Rechitisky,Tatyana Sharapova, Randy Morris, Mohammed Taranissi, Anver Kuliev, ‘Preimplantation HLA Testing’ (2004) 291 JAMA 2079.
[7] Ibid, 2082.
[8] Sydney IVF <http://www.sivf.com.au> (last accessed 14 June 2004).
[9] Personal communication with author- There have been approximately 1000 such births world wide.
[10] Sydney IVF above n 8.
[11] Jeffrey R Botkin, “Ethical issues and Practical Problems in Preimplantation Genetic Diagnosis” (1998) 26 Journal of Law, Medicine and Ethics 17.
[12] Susan M Wolf, Jeffrey P Kahn and John E Wagner, ‘Using preimplantation genetic diagnosis to create a stem cell donor: issues, guidelines & limits’ (2003) 31 Journal of Law, Medicine & Ethics 327.
[13] Ibid.
[14] At present more than 100 different genetic conditions are indications for PGD. Verlinski above n 6, 2079.
[15]Quintavalle v Human Fertilisation and Embryology Authority [2003] EWCA Civ 667 para. 80.
[16] Ibid para. 144.
[17] Genetics and Public Policy Center, Preimplantation Genetic Diagnosis (2004) available at
<http://www.dnapolicy.org/downloads/pdfs/policy_pgd.pdf> . PGD does not appear to cause an increase in the risk of genetic malformation in the resulting child- Jeffrey R Botkin ‘Ethical issues and Practical Problems in Preimplantation Genetic Diagnosis’ (1998) 26 Journal of Law Medicine and Ethics 17, 19.
[18] Yerlinski above n 6, 2083.
[19] Robert J Boyle and Julian Savulescu, ‘Ethics of Using Preimplantation Genetic Diagnosis to Select a Stem Cell Donor for an Existing Person’ (2001) 323 British Medical Journal 1240, 1242: (‘psychological harm.... even if it did occur, [is] unlikely to be so severe that it would be better for that particular child never to have existed’).
[20] Australian Health Ethics Committee of the National Health and Medical Research Council Ethical Issues in Donation of Organs or Tissues by Living Donors (Draft Discussion Paper 2) Canberra 1996,
11.
[21] Aaron Spital, ‘Unconventional Living Kidney Donors- Attitudes and Use among Transplant Centres’ (1989) 48 Transplantation 243, and Aaron Spital, ‘Should Children ever Donate Kidneys?’ (1997) 64 Transplantation 232.
[22] Australian Law Reform Commission Human Tissue Transplants ALRC 7 (1977).
[23] Sir Zelman Cowen and Mr Justice Brennan.
[24] A donor mortality rate of 0.4%. <http://www.nzliver.org> (last accessed 28 June 2004)
[25]World Health Organisation. Guiding Principles on Human Organ Transplantation. (1991) 337 Lancet 1470-1471, Principle 4.
[26] Law Reform Commission of Canada Procurement and Transfer of Human Tissues and Organs Working Paper 66 (Minister of Supply and Services, Ottawa 1992) 48.
[27] Lainie Friedman Ross, ‘Moral Grounding for the Participation of Children as Organ Donors’ (2001) 21 Journal of Law Medicine and Ethics 251.
[28] Robert A Crouch and Carl Elliott, ‘Moral Agency and the Family: The Case of Living Related Organ Transplantation’ (1999) 8 Cambridge Quarterly of Healthcare Ethics 275.
[29] Genetics and Public Policy Center, ‘Genetic testing of Embryos to Pick “Savior Sibling” Okay with Most Americans’, Media Release May 3 2004 available at
<http://tools-content.labvelocity.com/pdfs/5/63175.pdf> (last accessed 27 May 2004).
[30] Priscilla Alderson, Children’s Consent to Surgery (1993) 9.
[31] Re M B (Medical Treatment) [1997] 8 Med.LR 217, 224- see also Re C (Adult Refusal of Medical Treatment) [1994] 1 WLR 290.
[32] Gillick v West Norfolk and Wisbech A.H.A.(Gillick) [1985] UKHL 7; [1986] AC 112. The House of Lords held that some children are legally competent to consent to some medical treatment. They can give an effective consent to medical treatment when they have attained sufficient age and understanding to weigh the risks and the benefits of the proposed treatment.
[33] Re C [1997] 2 FLR 180, 196.
[34]Re R (a Minor)(Wardship: Medical Treatment) [1992] Fam.11, 26.
[35] Gillick v West Norfolk and Wisbech A.H.A. [1985] UKHL 7; [1986] AC 112.
[36] Re R (1991) 3 WLR 592.
[37] Re W (1992) 3 WLR 758; [1992] 4 All E R 627.
[38] Re W (1992) 3 WLR 758, 767F (CA).
[39] John Devereux, Medical Law (2nd ed, 2002) 86.
[40] Minors (Property and Contracts) Act 1970 (NSW) s 49(2) and Consent to Medical and Dental Procedures Act 1985 (SA) s.6(1).
[41] K v Minister for Youth and Community Services [1982] 1 NSWLR 311.
[42] Re A [1993] FamCA 68; (1993) FLC 92-402.
[43] Re Michael (1994) FLC 92-471; Re Michael (No 2) [1994] FamCA 169; (1994) FLC 92-486.
[44] Re GWW and CMW (1997) FLC 92-748.
[45] Re Alex: Hormonal Treatment for Gender Identity Dysphoria [2004] FamCA 297.
[46] NSW: Human Tissue Act 1983 ss 6,10-11; Vic: Human Tissue Act 1982 ss 5, 13-17; Qld: Transplantation and Anatomy Act 1979 ss 12A-12E; SA: Transplantation and Anatomy Act 1983 ss 7, 11-14; Tas: Human Tissue Act 1985 ss 5, 10-13; ACT: Transplantation and Anatomy Act 1978 ss 6, 11-14.
[47] Secretary, Department of Health and Community Services v JWB and SMB (re Marion) (1992)175 CLR 218.
[48] Gillick v West Norfolk and Wisbech A.H.A.(Gillick) [1985] UKHL 7; [1986] AC 112.
[49] Secretary, Department of Health and Community Services v JWB and SMB (re Marion) (1992)175 CLR 218, [19].
[50] Re GWW and CMW (1997) FLC 92-748.
[51] Secretary, Department of Health and Community Services v JWB and SMB (re Marion) (1992)175 CLR 218.
[52] Re GWW and CMW (1997) FLC 92-748.
[53] H v W [1995] FamCA 30; (1995) FLC 92-598.
[54] H v W [1995] FamCA 30; (1995) FLC 92-598, [58].
[55] Re GWW and CMW (1997) FLC 92-748.
[56] Re A above n 42.
[57] Re Alex: Hormonal Treatment for Gender Identity Dysphoria [2004] FamCA 297.
[58] Ibid, [168].
[59] Ibid [173].
[60] Ibid [198].
[61] Re GWW and CMW (1997) FLC 92-748.
[62] Gillick v West Norfolk and Wisbech A.H.A. [1985] UKHL 7; [1986] AC 112.
[63] Ibid.
[64] Re J (A Minor) (Consent to Medical Treatment) sub nom Re W (A Minor) (Medical Treatment : Court’s Jurisdiction) [1993] Fam 64 and Re R (A Minor)( Wardship : Consent to Treatment) [1992] Fam 11.
[65] Re J (an infant) [1995] 3 NZLR 73, 80.
[66] Graeme Austin, ‘Righting a child’s right to refuse medical treatment’ [1992] OtaLawRw 5; (1992) 7 Otago Law Review 578, 581.
[67] Clause 35 of the Care of Children Bill is proposed to replace s 25 Guardianship Act 1968.
[68] Austin above n 66, 581.
[69] <http://www.hdc.org.nz> (last accessed 21 June 2004).
[70] Such as Wisconson v Yoder [1972] USSC 102; 406 U.S. 205 (1972); Pierce v Society of Sisters [1925] USSC 168; 268 U.S. 510, 534-35 (1925).
[71] Children’s Healthcare is a Legal Duty, Religious Exemptions from Health Care for Children, available at <http://www.childrenshealthcare.org/legal.htm> (last accessed 21 June 2004).
[72] Hermanson v. State, 604 So.2d 775, 782 (Fla. 1992); Commonwealth v. Twitchell, 617 N.E.2d 609, 618 (Mass. 1993); Commonwealth v. Nixon, 761 A.2d 1151, 1152 (Pa. 2000).
[73] Hart v Brown (1972) 289 A 2d 386.
[74] Little v Little (1979) 576 SW 2d 493.
[75] Little v Little (1979) 576 SW 2d 493, 500.
[76] Curran v Bosze (1990) 566 NE 2d 1319.
[77] Ferninand Schoeman, ‘Rights of Children, Rights of Parents, and the Moral Basis of the Family’ (1980) 91(1) Ethics 8.
[78] Ibid 50.
[79] Ferninand Schoeman, ‘Parental Discretion and Children’s Rights: Background and Implications for Medical Decision-Making’ (1985) 10 Journal of Philosophy and Medicine 48.
[80] Robert M Veatch, ‘Limits of Guardian Treatment Refusal: A Reasonableness Standard’ (1983) 9 American Journal of Law and Medicine 427.
[81] Director General of the Department of Community Services v "BB" [1999] NSWSC 1169.
[82] Lainie Friedman Ross, ‘Moral Grounding for the Participation of Children as Organ Donors’ (2001) 21 Journal of Law Medicine and Ethics 251,252.
[83] Ibid 253.
[84] S v S; W v Official Solicitor [1972] AC 24.
[85] S Elizabeth Mumford, ‘Bone Marrow Donation- The Law in Context’ (1998) Child and Family Law Quarterly 135,144.
[86] Rachel M Dufault, ‘Bone Marrow Donations by Children: Rethinking the Legal Framework in Light of Curran v Bosze’ (1991) 24 Connecticut Law Review 211, 237.
[87] C H Fellner and J R Marshall, ‘Kidney Donors: the Myth of Informed Consent’ (1970) 126 American Journal of Psychiatry 1245.
[88] D M Bernstein and R G Simmons, ‘The Adolescent Kidney Donor: The Right to Give’ (1974) 131 American Journal of Psychiatry 1338.
[89] B L Freund and K Siegel, ‘Problems in Transition Following Bone Marrow Transplantation: Psychosocial Aspects’ (1986) 56 American Journal of Orthopsychiatry 244.
[90] Jennifer K Robbennolt, Victoria Welsz and Craig M Lawson, ‘Advancing the Rights of Children and Adolescents to be Altruistic: Bone Marrow Donation by Minors’ (1994) 9 Journal of Law and Health 213.
[91]Philip Cohen, ‘Donor’s Dread: Why do Children Who Help a Sick Sibling End up Depressed?’ (1997) 55 New Scientist 20.
[92] Cara Cheyette, ‘Organ Harvests from the Legally Incompetent: An Argument Against Compelled Altruism’ (2000) 41 Boston College Law Review 465.
[93] Stephane Viville and Deborah Pergament, ‘Results of a Survey of the Legal Status and Attitudes Towards Preimplantation Genetic Diagnosis Conducted in 13 Different Countries’ (1998) 18 Prenatal Diagnosis 1374-80. UNESCO's International Bioethics Committee issued a draft policy in late 2002, UNESCO, International Bioethics Committee (IBC), Working Group of the IBC on Pre-implantation Genetic Diagnosis and Germ-line Intervention, Draft Report on Pre-implantation Genetic Diagnosis and Germ-line intervention Paris, Sept. 30 2002, no. SHS/EST/02/CIB-9/2.
[94] Human Fertilisation and Embryology Authority and Human Genetics Commission Outcome of the Public Consultation on Preimplantation Genetic Diagnosis (2001) available at <www.hfea.gov.uk> (last accessed 14 May 2004).
[95] Clare Dyer, ‘Watchdog Approves Embryo Selection to Heal 3 Year Old Child’ (2002) 324 British Medical Journal 503. The Whitaker family who have a child suffering from Diamond-Blackfan anaemia, subsequently travelled to the United States for the treatment and delivered a healthy baby, who was HLA matched to the ill child. Roger Dobson, ‘Savior Sibling’ is Born after Embryo Selection in the United States’ (2003) 326 British Medical Journal 1416.
[96] Ethics Committee of the Human Fertilization and Embryology Authority Ethical Issues in the Creation and Selection of Preimplantation Embryos to Produce Tissue Donors (2001) <www.hfea.gov.uk> (last accessed 16 June 2004).
[97] Sally Sheldon and Stephen Wilkinson, ‘Hashmi and Whittaker: An Unjustifiable and Misguided Distinction?’ (2004) 12 Medical Law Review 137.
[98] Sheldon and Wilkinson above n 97, 160.
[99] Ibid.
[100] HFEA Press Release “HFEA agrees to extend policy on tissue typing” 21 July 2004 available on-line at <www.hfea.gov.uk> (last accessed 8 August 2004).
[101] Infertility Treatment Authority, Tissue Typing in Conjunction with Preimplantation Genetic Diagnosis (2003). Available on-line at:
<http://www.ita.org.au/_documents/policies/Policy_PGD_HLA_Matching.pdf>
[102] Ka Wah Chan, James L Gajewski, Daniel Supkis Jr, Rebecca Pentz, Richard Champhin, Archie Bleyer, ‘Use of Minors as Bone Marrow Donors: Current Attitude and Management: A Survey of 56 Pediatric Transplant Centers’ (1996) 128 Journal of Pediatrics 644.
[103] See Rebecca Dressler, ‘Feeding the Hunger Artists: Legal issues in Treating Anorexia Nervosa’ [1984] Wisconsin Law Review 297, 328-339.
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