The genealogical jigsaw puzzle - a missing piece? the right to know for A.I.D. children

This paper examines current UK legal regulation relating to the provision of genetic background information to children born by donor insemination (Dl) and argues in favour of changes to the existing law - the Human Fertilisation and Embryology Act 1990. The proposals for reform suggested in this paper would allow for Regulations to sanction the disclosure of both non-identifying and identifying information to Dl children. These Regulations and the form they might take have been the subject of a recent government Consultation Paper, the response to which has been a majority in favour of the enactment of Regulations to allow disclosure of both types of information to donor offspring. This paper proposes that donor offspring should be granted the right to be told of their status and the right to receive information about their genetic background, whilst they are still children. This paper analyses the issues raised in the Consultation Paper and the arguments for and against the enactment of Regulations. Existing sociological and psychological research demonstrates the importance of genetic heritage information for the development of a child's identity. The provision of genealogical information can also be justified by reference to the child's right to an identity under international human rights law. However, the concepts of secrecy and anonymity have thus far influenced this area of law allowing for the protection of the rights of the social parents of Dl children and the donors respectively. Therefore, this paper advocates that the concept of openness should feature heavily in any future legislative measures. Based on evidence from other jurisdictions, this paper argues for the enactment of Regulations in the near future to allow for the protection of the rights of the Dl child, which have until now been unjustifiably overlooked by the UK legislature

International Women’s Day (#IWD2017) book review: the persistence of gender inequality by Mary Evans

In The Persistence of Gender Inequality, Mary Evans focuses on the continued structural inequalities between genders that go against optimistic narratives speaking only of inevitable progress and emancipation. This is a powerful and timely commentary on the persistence of inequalities throughout society that shows how tough the fight for equality has been – and may continue to be – as we collectively work to redefine the contours of our gendered political and social landscapes, writes Caroline Henaghan. This review is published to mark International Women’s Day: a global day celebrating the economic, political and social achievements of women

Book review: in search of criminal responsibility: ideas, interests and institutions by Nicola Lacey

Within In Search of Criminal Responsibility: Ideas, Interests and Institutions, Nicola Lacey investigates changing understandings of criminal responsibility in England and Wales from the mid-eighteenth century to the present, reflecting on its current place within legal, social, political and cultural frameworks. This is an accessible and erudite account that represents an important and illuminating divergence from traditional scholarship, finds Caroline Henaghan

Gene Editing in Aotearoa – Legal Considerations for Policy Makers

Gene editing use in pest control, primary industries and human health care pose significant new challenges for regulation. Under current New Zealand legislation (the Hazardous Substances and New Organisms Act 1996) and a judicial ruling on interpretation of the legislation and regulations, the status of gene edited organisms in New Zealand are considered genetically modified and are regulated as new organisms employing a precautionary approach. This article has identified some of the complexities of the legislation inherent in regulating a rapidly developing technology, where such advances may be well ahead of current frameworks and public acceptance. Legal and policy issues have been considered. A future-proof framework to keep abreast rapidly advancing biotechnologies is required whereby new legislation for biotechnologies is developed and a single-entry point for biotechnology applications is implemented. Most importantly this article recommends valuing Treaty of Waitangi principles and have those principles lead us in all that we do.&nbsp

Genetic Testing and Microarray Technologies

The use of microarrays allows many genetic tests to be done simultaneously on one genetic sample and changes (mutations) to be found that are currently not detected. Microarrays are being used predominantly in the research sector. There has been some movement into the clinical testing and diagnostics arena internationally, but its eventual utility in clinical screening remains to be seen. The diagnostic aspect of microarrays has been enthusiastically reported in the clinical and scientific literature and remains one of the most likely uses of the technology as the cost comes down. There is still a technology block regarding the use of microarrays with PGD for aneuploidy screening in the form of whole genome amplification. If this problem can be overcome, microarrays could conceivably make a positive difference to implantation rates and reduce miscarriage rates for those who choose to use PGD for this purpose. PGD requires, however, that in vitro fertilisation (IVF) be used to generate embryos for testing. It is therefore unlikely that it will ever be used outside fertility clinics and, even then, only for a subset of clients. Future use remains debatable. As the cost comes down, microarrray technologies will likely supersede the existing cytogenetic technologies as a first-line prenatal test

New Possibilities for Newborn Genetic Screening: Screening for Genetic Susceptibility to Common Disease

The review of the psychosocial effects of newborn genetic susceptibility testing has highlighted the fact that there are several good reasons to be concerned about such testing. These include features inherent in the newborn period; characteristics of the tests themselves; and evidence from previous and current newborn screening programmes. There remains a relative paucity of empirical research in this area but evidence, including the results of research for this Report, is gradually accruing to suggest that families generally cope well with type 1 diabetes (T1D) genetic risk information concerning their children, if it is conveyed sensitively. At this stage, the research remains fairly limited both in focus and duration and the need for further research in this area has been highlighted. Screening children for susceptibility to certain diseases which have a genetic base, for example T1D, has the potential to enable parents to ensure that the environment is appropriate for a child with the susceptibility. The major concern about widespread uses of such screening is that parents may overreact if they find out the child has a susceptibility to diabetes and overprotect the child. Three mother-baby cohorts are studied: thirty-eight infants at increased genetic risk of T1D, seventy-three at low genetic risk and seventy-six who had not undergone testing. Our main focus was to see whether or not the parents who knew of the risk would have an urge to overprotect their child and to be overly zealous about surveillance. In fact, the outcome was surprising. The group of parents who knew their child had an increased risk of T1D were in fact lowest on the anxiety scale in terms of how they related to their child. This is only preliminary research but it does show that information about a child’s risks does not necessarily lead to parents becoming over-anxious. There is potential for such information to empower parents to ensure that the environment is healthy for the particular child. Achieving a proper balance between the social good that may come from performing this type of research involving children, and the level of protection offered to child participants, is a significant challenge. Such research itself involves complex ethical and social issues. Particular attention must be given to minimising risks to children and implementing procedures for obtaining the informed consent or assent of parents and child participants when screening newborns for genetic susceptibility for common diseases. Empirical research concerning the potential psychosocial harms of newborn susceptibility testing is essential if we are to make rational decisions regarding the use of such tests. Analysis of harms and benefits is fundamental to the consideration of the introduction of new screening programmes. Newborn screening for genetic susceptibility is currently only available in research settings because of the lack of detailed knowledge concerning harms and benefits; the lack of preventative measures; and the relative expense and complexity of testing. The research carried out here aims to provide more information on which to base decisions about future uses for these tests. If the pathogenesis of T1D is eventually better understood, and a preventative measure developed, even if only partially effective, then the benefits of screening may well outweigh the risks. If this eventuates, screening for genetic susceptibility to T1D should be reassessed using the usual processes and screening criteria applied when considering the introduction of a new test on standard newborn screening panels

Conclusions and Recommendations

Genetic testing raises new issues from those involved in other medical contexts, particularly for children. Most of the concerns relevant to minors are prompted by the familial and predictive aspects of genetic information. It is vital that GPs and other health professionals know more about genetic testing and genetics services in New Zealand, so that they can better facilitate informed consent; recognise and acknowledge any limitations in their expertise, particularly as they will influence their patients when discussing testing possibilities; know when to refer patients for genetic testing; and can offer some degree of genetic counselling, if required. Genetic testing of children who lack capacity to consent to genetic testing for non-medical reasons should be treated with caution. Many adults choose not to discover their own genetic risk status and the threat to the child’s autonomy and right to confidentiality are the reasons for this caution. Also, where there is a lack of evidence about what the test results may signify for the child’s health, this uncertainty is best dealt with by waiting until the child is able to make personal choices. A register should be established to facilitate disclosure to persons who have reached the age of sixteen or eighteen years (or earlier if they are competent and personally seek access to the information) of the fact that they underwent genetic testing as children. Initially, the minors may be informed either that they underwent predictive or carrier testing as children, or that some information is available about genetic risk status should they wish to access it. Such a register is the appropriate method for ensuring that people who undergo testing as children are informed of the fact for the following reasons. Firstly, it would encourage parents and health professionals to disclose test results to children – as the fact of testing will be disclosed to them anyway. Secondly, it gives the person tested a choice regarding whether or not to access the information (assuming that he or she has not already been told). Thirdly, it avoids the difficulties of imposing a new disclosure duty that may have unwieldy and undesirable consequences in terms of monitoring, enforcement and sanctions. Genetic counselling would be required to assist minors in deciding whether to access their test results, and to support them whatever their choice. The privacy of the register and its information must be strictly maintained