The legality of tissue transplants for the benefit of family members in the UK and Australia : implications for saviour siblings

The ethics of creating ‘saviour siblings’ for the benefit of another has received much attention, but little consideration has been given to the legal position of those saviours born who may be asked to provide tissue for transplantation to another during childhood. This article examines the ethical issues surrounding minor donation as well as the existing legal framework in the UK and Australia that regulates minors providing tissue for the benefit of another. Against this background the position of minor saviours, who are called upon to donate bone marrow or peripheral blood stem cells, is examined. This analysis suggests that the law does not provide sufficient protection for minor saviours who are called upon to donate to another. It is argued that specific ethical obligations are owed to saviours—that ought to be reflected in the law—in order to protect them from exploitation while they remain minors.

Regulating IVF and pre-implantation tissue-typing for the creation of "saviour siblings" : a harm analysis

Scientific discoveries, developments in medicine and health issues are the constant focus of media attention and the principles surrounding the creation of so called ‘saviour siblings’ are of no exception. The development in the field of reproductive techniques has provided the ability to genetically analyse embryos created in the laboratory to enable parents to implant selected embryos to create a tissue-matched child who may be able to cure an existing sick child. The research undertaken in this thesis examines the regulatory frameworks overseeing the delivery of assisted reproductive technologies (ART) in Australia and the United Kingdom and considers how those frameworks impact on the accessibility of in vitro fertilisation (IVF) procedures for the creation of ‘saviour siblings’. In some jurisdictions, the accessibility of such techniques is limited by statutory requirements. The limitations and restrictions imposed by the state in relation to the technology are analysed in order to establish whether such restrictions are justified. The analysis is conducted on the basis of a harm framework. The framework seeks to establish whether those affected by the use of the technology (including the child who will be created) are harmed. In order to undertake such evaluation, the concept of harm is considered under the scope of John Stuart Mill’s liberal theory and the Harm Principle is used as a normative tool to judge whether the level of harm that may result, justifies state intervention or restriction with the reproductive decision-making of parents in this context. The harm analysis conducted in this thesis seeks to determine an appropriate regulatory response in relation to the use of pre-implantation tissue-typing for the creation of ‘saviour siblings’. The proposals outlined in the last part of this thesis seek to address the concern that harm may result from the practice of pre-implantation tissue-typing. The current regulatory frameworks in place are also analysed on the basis of the harm framework established in this thesis. The material referred to in this thesis reflects the law and policy in place in Australia and the UK at the time the thesis was submitted for examination (December 2009).

Supporting siblings of children with a rare chromosome disorder

Siblings play an important role in children’s learning and development. Interactions with brothers and sisters provide opportunities to learn about sharing and emotional reciprocity, to develop social skills, to express thoughts and feelings, and to practise resolving conflict. But for children whose brother or sister has a disability, such as a rare chromosome disorder, some of these sibling experiences may be different. Many parents worry about how their non-disabled child will be affected by the experience of living with a brother or sister with a disability, and a great deal of research has explored both the possible negative consequences and also the potential benefits for siblings. In this article, we summarise the research findings and provide suggestions for ways that parents can support the positive development and well-being of all their children.

Creating 'saviour siblings' : the notion of harming by conceiving in the context of healthy children

Over the past decade there have been a number of families who have utilised assisted reproductive technologies (ARTs) to create a tissue-matched child, with the purpose of using the child’s tissue to cure an existing sick child. This inevitably brings such families a sense of hope as the ultimate aim is to overcome a family health crisis. However, this specific use of reproductive technologies has been the subject of significant criticism, most of which is levelled against the potential harm to the ‘saviour’ child. In Australia, families seeking to access reproductive technologies in this context are therefore required to justify their motives to an ethics committee in order to establish, amongst other things, whether the child will suffer harm once born. This paper explores the concept of harm in the context of conception, focusing on whether it is possible to ‘harm’ a healthy child who has been conceived to save another. To achieve this, the paper will evaluate the impact of the ‘non-identity’ principle in the ‘saviour sibling’ context, and assess the existing body of literature which addresses ‘harm’ in the context of conception. As will be established, the majority of such literature has focused on ‘wrongful life’ cases which seek to address whether an existing child who has been born with a disability, has been harmed. Finally, this paper will distinguish the harm arguments in the ‘saviour sibling’ context based on the fact that the harm evaluation concerns the ‘future-life’ assessment of a healthy child.

The Human Fertilisation and Embryology Act 2008 : restrictions on the creation of “saviour siblings” and the relevance of the harm principle

This paper provides an overview of the regulatory developments in the UK which impact on the use of in vitro fertilization (IVF) and embryo screening techniques for the creation of “saviour siblings.” Prior to the changes implemented under the Human Fertilisation and Embryology Act 2008, this specific use of IVF was not addressed by the legislative framework and regulated only by way of policy issued by the Human Fertilisation and Embryology Authority (HFEA). Following the implementation of the statutory reforms, a number of restrictive conditions are now imposed on the face of the legislation. This paper considers whether there is any justification for restricting access to IVF and pre-implantation tissue typing for the creation of “saviour siblings.” The analysis is undertaken by examining the normative factors that have guided the development of the UK regulatory approach prior to the 2008 legislative reforms. The approach adopted in relation to the “saviour sibling” issue is compared to more general HFEA policy, which has prioritized the notion of reproductive choice and determined that restrictions on access are only justified on the basis of harm considerations.

Symbiotic relationships : saviour siblings, family rights and biomedicine

It is now possible to combine the use of preimplantation genetic diagnosis (PGD) and tissue matching to select an IVF embryo that will, after birth, be a compatible tissue donor for an existing individual. This article analyses the ethical issues and the regulatory frameworks that intersect around the creation of tissue compatible children.

Shared caregiving responsibilities of adult siblings with elderly parents

This paper uses a nonstructural, ordered discrete choice model to measure the effects of various parent and child characteristics upon the independent caregiving decisions of the adult children of elderly parents sampled in the 1982 and 1984 National Long Term Care Survey (NLTCS). While significant effects are noted, emphasis is placed on test statistics constructed to measure the independence of caregiving decisions. The test statistic results are conclusive: The caregiving decisions of adult children are dependent across time and family members. Structural models taking dependencies among family members into account note effects similar to those in the nonstructural model.

Genetics of white matter development: A DTI study of 705 twins and their siblings aged 12 to 29

White matter microstructure is under strong genetic control, yet it is largely unknown how genetic influences change from childhood into adulthood. In one of the largest brain mapping studies ever performed, we determined whether the genetic control over white matter architecture depends on age, sex, socioeconomic status (SES), and intelligence quotient (IQ). We assessed white matter integrity voxelwise using diffusion tensor imaging at high magnetic field (4-Tesla), in 705 twins and their siblings (age range 12-29; 290. M/415. F). White matter integrity was quantified using a widely accepted measure, fractional anisotropy (FA). We fitted gene-environment interaction models pointwise, to visualize brain regions where age, sex, SES and IQ modulate heritability of fiber integrity. We hypothesized that environmental factors would start to outweigh genetic factors during late childhood and adolescence. Genetic influences were greater in adolescence versus adulthood, and greater in males than in females. Socioeconomic status significantly interacted with genes that affect fiber integrity: heritability was higher in those with higher SES. In people with above-average IQ, genetic factors explained over 80% of the observed FA variability in the thalamus, genu, posterior internal capsule, and superior corona radiata. In those with below-average IQ, however, only around 40% FA variability in the same regions was attributable to genetic factors. Genes affect fiber integrity, but their effects vary with age, sex, SES and IQ. Gene-environment interactions are vital to consider in the search for specific genetic polymorphisms that affect brain integrity and connectivity.

Genetic influences on brain asymmetry: A DTI study of 374 twins and siblings

Brain asymmetry, or the structural and functional specialization of each brain hemisphere, has fascinated neuroscientists for over a century. Even so, genetic and environmental factors that influence brain asymmetry are largely unknown. Diffusion tensor imaging (DTI) now allows asymmetry to be studied at a microscopic scale by examining differences in fiber characteristics across hemispheres rather than differences in structure shapes and volumes. Here we analyzed 4. Tesla DTI scans from 374 healthy adults, including 60 monozygotic twin pairs, 45 same-sex dizygotic pairs, and 164 mixed-sex DZ twins and their siblings; mean age: 24.4 years ± 1.9 SD). All DTI scans were nonlinearly aligned to a geometrically-symmetric, population-based image template. We computed voxel-wise maps of significant asymmetries (left/right differences) for common diffusion measures that reflect fiber integrity (fractional and geodesic anisotropy; FA, GA and mean diffusivity, MD). In quantitative genetic models computed from all same-sex twin pairs (N=210 subjects), genetic factors accounted for 33% of the variance in asymmetry for the inferior fronto-occipital fasciculus, 37% for the anterior thalamic radiation, and 20% for the forceps major and uncinate fasciculus (all L > R). Shared environmental factors accounted for around 15% of the variance in asymmetry for the cortico-spinal tract (R > L) and about 10% for the forceps minor (L > R). Sex differences in asymmetry (men > women) were significant, and were greatest in regions with prominent FA asymmetries. These maps identify heritable DTI-derived features, and may empower genome-wide searches for genetic polymorphisms that influence brain asymmetry.

Saviour Siblings and the Regulation of Assisted Reproductive Technology: Harm, Ethics and Law

Advances in the field of Assisted Reproductive Technology (ART) have been revolutionary. This book focuses on the use of ARTs in the context of families who seek to conceive a matching sibling donor as a source of tissue to treat an existing sick child. Such children have been referred to as ‘saviour siblings’. Considering the legal and regulatory frameworks that impact on the accessibility of this technology in Australia and the UK, the work analyses the ethical and moral issues that arise from the use of the technology for this specific purpose. The author claims the only justification for limiting a family’s reproductive liberty in this context is where the exercise of reproductive decision-making results in harm to others. It is argued that the harm principle is the underlying feature of legislative action in Western democratic society, and as such, this principle provides the grounds upon which a strong and persuasive argument is made for a less-restrictive regulatory approach in the context of ‘saviour siblings’.

Portrait of siblings Hans Ludwig (Hal) and Elizabeth Gottschalk.

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Portrait of the six Baum family siblings Portraits Family

Standing are Fritz, Joseph and Lilly. The youngest is Hans. Erich is seated center and Walter is seated on the far right.

Family portrait of siblings Wladimir, Rosa, Lena and Georg Eliasberg; New York Portraits Family

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