Title : Bioethics and the Law: The Impact of the Genetic : Technology on Prenatal Management Author : Brenda McGivern Organisation : School of Law, Murdoch University Language : English Keywords : Genetic technology, bioethics, prenatal care, : pregnancy Abstract : This paper examines genetic technology, bioethics : and the law in respect of prenatal care. It : seeks to highlight areas of inconsistency between : bioethics and current Australian law/legal policy, : and to indicate where the law is inadequate to deal : with the new issues arising out of advances in : genetic technology prenatally. The author concludes : that further attention needs to be given to the : appropriate role of law in society and to the : appropriate regulatory mechanisms to achieve reform : in these areas and that it is vital any policy : should be reflective of the views of women in : accordance with their peculiar interest in, and : centrality to, the issues of pregnancy and : childbirth. The reform process should involve : public debate, expert advice and ethical : consideration in order to produce a regulatory : framework that will adequately deal with the medical : and social issues covered by the area. Citation : E Law - Murdoch University Electronic Journal of Law, : vol 2, no 3, (December, 1995) (There are no page : numbers.) ISSN : 1321-8247 Contact name : The Editors, E Law Contact address : School of Law, Murdoch University, PO Box 1014 : Canning Vale, Western Australia 6155 Contact phone : +61 9 360 2979 Contact e-mail : elaw-editors@central.murdoch.edu.au Creation Date : 13 November 1995 Filename : mcgivern.txt File Size : 124 KB File Type : Document File Format : ASCII Publication Status : Final Copyright and Copying Policy: Material appearing in E Law is accepted on the basis that the material is the original, uncopied work of the author or authors. 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RETRIEVAL- EMAIL: message "get elaw-j mcgivern.txt" to majordomo@cleo.murdoch.edu.au URL: gopher://infolib.murdoch.edu.au:70/00/.ftp/pub/subj/law/jnl/elaw/ refereed/mcgivern.txt URL: ftp://infolib.murdoch.edu.au/pub/subj/law/jnl/elaw/ refereed/mcgivern.txt URL: http://wwwlib.murdoch.edu.au:8088/ecolln/type/jnls/murdoch/elaw /elaw.html --------------------------------------------------------------- BIOETHICS & THE LAW: THE IMPACT OF GENETIC TECHNOLOGY ON PRENATAL MANAGEMENT Brenda McGivern INTRODUCTION Sir Victor Windeyer once commented that the law was "marching with medicine but in the rear and limping a little."[1] As biotechnology, particularly genetic technology, has advanced even more rapidly in the two decades since this observation was made, care should be taken that the law is not left behind completely. It has been observed that rapid changes in social conditions and medical science demand clear rules of law to govern the new fields of advancement.[2] In order to accomplish this goal it is suggested that "... the law must build a framework that will recognise the complex moral and ethical issues surrounding research ..."[3] With this in mind, it is proposed to examine bioethics and the law as they apply to the issues of prenatal diagnosis and abortion on genetic grounds. Specifically, attention will focus on the impact of genetic technology in these areas. The purpose of this paper is to determine the extent to which existing law and legal policy is consistent with bioethical principles, and the extent to which it is adequately equipped to deal with emergent genetic technologies and the prenatal issues they raise.[4] It should be noted that the parameters set by the topic of this paper require a comparative analysis of bioethics and the law. It therefore falls outside the scope of this paper to undertake a detailed analysis of feminist thought in the area of research. However, given the centrality of women to the issue of childbirth and pregnancy, it is submitted that one is (bio)ethically compelled to consider the interests of women in these areas. Thus, whilst not comprehensive, nor intended to be representative of all women's views, some of the most common criticisms and concerns encountered in feminist literature will be examined in the course of discussion. This will be done particularly with respect to the maternal/foetal relationship, and in the arguments against genetic testing based on the eugenic fear. Similarly, some of the most commonly expressed concerns regarding genetic testing raised by the disabled community will be addressed. In view of the technical nature of some aspects of this paper, a glossary of medical terms is provided. Discussion will begin, in Part 1, with an outline of some of the most important current advances in genetic technology. The Human Genome Project represents one of the most ambitious and influential projects in biotechnology, introducing with it a range of technological advances that will influence both the type and scope of genetic knowledge. A brief outline of this project's achievements and ultimate goals will therefore be undertaken to illustrate its importance to, and anticipated impact upon, the genetic technology applied before birth. Since the law and legal policy will be examined in light of bioethical thought, the first part will include an overview of the core bioethical principles which will facilitate analysis in subsequent sections. It is proposed to begin the subsequent analysis with an outline of the current legal context in which the debated issues arise, followed by an examination of the bioethical and philosophical considerations those issues entail. Each section will conclude with an analysis of whether the law and legal policy, in light of current technology, are consist with bioethical principles, and their ability to cope with the issues arising from genetic advances. By way of conclusion, a summation of the arguments, and an outline of the submissions, made in the paper will be given. Some issues requiring consideration which were raised by this research, but which fell outside the scope of this paper, are suggested for future research. 1. PART 1 1.1 GENETIC AND BIOETHICAL BACKGROUND 1.1.1 THE HUMAN GENOME PROJECT In order to predict the effects that genetic technology will have upon pregnancy management, it is necessary to consider the most recent research undertaken in the field of genetics. An examination of this type should concentrate not only on the findings of such research, but also upon the methods, technologies and resultant testing and therapeutic capabilities it embraces. By far the most recent, ongoing and ambitious research being undertaken in the genetic arena is that involved in the Human Genome Project (HGP), which has been described as "a coordinated effort to characterise the entire human genome."[5] Technical advances made in the 1970s and 1980s introduced the possibility of a large human genetics research project. The impetus for the project took the form of a "radical" proposal that there should be a massive injection of funds to enable a systematic and international effort to analyse the human genome.[6] To this end, international funding in the amount of an estimated $5 billion has been allocated for the 15-year duration of the programme. Genetic research and testing are by no means new to the field of medicine. For example, genetic screening was mandated in the 1970s in some US states for the hereditary disorder sickle cell anaemia in black children.[7] However, the size and structure of the HGP have required the formulation of specific goals and the organisation of resources required to attain those goals.[8] The magnitude of the HGP has been described as "biology's equivalent to putting a man on the moon"[9] and has therefore attracted vigorous debate regarding its legal, ethical and economic implications. Thus, whilst some issues are not unique to the HGP, "[w]hat the ... project has done is to intensify the debate and bring it into the public domain."[10] In order to appreciate these issues, however, the project itself will need to be examined. Genetic Background Every human has traits developed from a combination of genetic characters inherited from each parent. Human heredity is based upon genes passed on in genetic material originating in equal proportions from the parental gametes. Each gene encodes information specifying a single gene product. These gene products, either singularly (in so-called Mendelian inheritance) or in combination with other gene products, determine a specific inherited trait. These genes are arranged in linear sequences along chromosomes located in the nucleus of each cell.[11] The human genome includes 23 pairs of chromosomes in each non-reproductive cell in the form of DNA (the molecular basis for the genetic code). Genes are composed of unique segments of genetic code (that is, a unique sequence of nucleotides) along a given chromosome. It is the individual assemblage of our genes and the proteins derived from them that make us unique. Thus, if the location of each gene on our chromosomes is known, and its code can be determined, much information may be extracted about the functioning and make-up of our bodies.[12] The difficulty of the location of specific genes is highlighted by the fact that: "[l]ess than 10% of the human genome is estimated to contain coding regions associated with genes. An important part of the Human Genome Project ... is the location of the 50,000-100,000 genes buried within the human genome."[13] Despite this inherent difficulty, technological advances associated with the HGP - including automated cloning equipment, techniques such as the polymerase chain reaction (PCR) and rough computerised maps of regions of DNA[14] - have enabled extraordinary progress since the project's inception in 1991. Scientists are currently locating human genes at a rate of one or more per day and over the past year have, amongst others, specified genes associated with Huntington's disease, adrenoleukodystrophy (a major form of ataxia)[15] and, significantly, the first breast cancer gene.[16] 1.1.2 Goals for the HGP A set of specific goals for the 15-year HGP had, by 1990, been formulated and were presented to Congress in the USA.[17] These long term objectives include the mapping of all the 50,000-100,000 genes and the determination of the complete sequence of the human genetic code. Further, more specific goals have been set for the first five years of the project[18] to guide the shorter term progress of the initiative. Areas of goal-setting include genetic mapping, physical mapping and DNA sequencing, informatics, technology development and ethical considerations. These areas are closely interrelated as may be illustrated by the ultimate goal of the project, to produce the ultimate physical map by determining the entire DNA sequence of the human genome. This goal will only be realised if the project overcomes the concern of the scientific community namely, whether the project is cost-effective in terms of the value of scientific information gained compared with the money and effort invested to obtain it[19]. Utilising today's best available equipment, an approximate 50,000-100,000 nucleotides can be sequenced annually at a cost of around $1-2 per nucleotide. This would result in an unacceptable 30,000 work-years and at least $3 billion to complete the task. In order to improve cost and efficiency, two approaches are being taken: the enhancement of current sequencing techniques, and the formulation of novel strategies for large-scale sequencing projects. The resultant technologies must be largely automated and capable of high through-put.[20] It is worth noting that a significant portion of the allocated budget for the HGP has been dedicated to the goal of developing programmes to address ethical, legal and social considerations[21] arising from medical advances resulting from the project. Prenatal diagnosis represents one of the most obvious and contentious areas in which these advances will take effect. As the HGP assists with earlier, more comprehensive and more accurate diagnosis of genetic diseases, it helps to increase the available management options, including those of pregnancy termination and the possibility of genetic therapies. From a regulatory point of view, the legal position should be examined in order to assess the availability of these management options under current Australian law. However, the application of genetic testing to these ends will also inevitably involve considerations concerning the moral and ethical implications of pregnancy management. Therefore, the core bioethical principles, which will facilitate discussion in subsequent parts, are outlined below. 1.2 BIOETHICAL PRINCIPLES Human development may be viewed in a number of ways, ranging from clinical approaches (for instance biology and chemistry) to disciplines incapable of scientific analysis (such as theology and philosophy).[22] However, medicine arguably falls somewhere between, being concerned both with the systematic study of the unique workings of the individual and the total context in which that individual lives.[23] As such, it is appropriate that medical ethics be based not only on strong philosophical grounds, but that physiological, psychological and other relevant perspectives also be taken into account. Developed from these considerations (and first extrapolated in the Hippocratic Oath) are six fundamental principles which are central to any discussion regarding ethical concerns in a medical context. These principles underlie bioethical decision making and strongly influence the scope and practices in that body of ethical guidance.[24] Any detailed examination of these principles would involve extensive discussion and is hence precluded by the constraints of this study. However, a summarised table of these tenets of medical ethics is produced to facilitate discussion of the ethical issues arising in subsequent parts. TABLE 1: Ethical Principles for Biomedical Practice[25] Respect for persons: the duty to respect the self determination and choices of autonomous persons, as well as to protect persons with diminished autonomy. Beneficence: the obligation to secure the well-being of persons by acting positively on their behalf and, moreover, to maximise the benefits that can be attained. Nonmaleficence: the obligation to minimise harm to persons and, wherever possible, to remove the causes of harm altogether. This is less of a positive duty than beneficence; rather, it is an obligation to avoid doing harm. Justice: the obligation to distribute benefits and burdens fairly, to treat equals equally, and to give reasons for differential treatment based on widely accepted criteria for just ways to distribute benefits and burdens. Confidentiality: the obligation to keep information gained in the course of medical practice confidential. Veracity: the obligation to develop trust through truth telling and to recognise the right of all people to have access to information pertaining to themselves. Of particular significance in the current context are the concepts of beneficence and nonmaleficence. The former principle requires the doctor to consider and recommend those therapeutic options that provide the best balance between benefit and harm. Closely interrelating to this principle is its corollary, that of non-maleficence. This obligation, requiring that the doctor avoid doing harm, has gained eminence in the history of ethics and especially in biomedical ethics[26] and is often considered to be the overriding of the two principles. Respect for the principle of autonomy may involve some conflict with those of beneficence and non- maleficence. This principle, in the context of foetal medicine, is based on an understanding and acceptance that the maternal patient has values and beliefs, and that she has the right to make reproductive choices in accordance with those values. The recognition of bodily integrity and self determination are also essential tenets of autonomy. The principle of proportionality, or the "utilitarian" principle,[27] is also often included in examinations of medical ethics. This standard refers to the duty, when taking actions that involve risks of harm, to so balance risks and benefits that action s have the greatest chance to result in the least harm and the most benefit to those involved.[28] Strongly related to this concept is the theory of common good in medical ethics. This theory requires that medical institutions give explicit consideration to the relationship and possible clash between social and individual values.[29] Accordingly, interests other than those of the individuals directly involved may validly be taken into account in decision making. The weight accorded to those external interests will, however, seldom be determinative and will necessarily depend on the circumstances of each case. The concept of justice embraces two dimensions: horizontal and vertical equity. The former refers to the obligation to treat equals equally. The latter refers to the obligation to treat unequals unequally in proportion to their morally relevant inequalities.[30] A thorough discussion of these principles and their application has not been attempted in this section. Rather, it is intended to refer to, and apply, them in subsequent discussions concerning the issues arising out of genetic technology prenatally. 2. PART 2 2.1 THE CURRENT LEGAL CONTEXT Since the stated purposes of this paper are to analyse the law for its consistency with bioethical principles and its ability to cope with genetic advances, it is necessary to undertake an examination of current law. This will be done in the context of prenatal care, focussing on the body of law applicable to the post-implantation embryo/foetus. 2.1.1 Post-Implantation - The Legal Position Existing law regarding the legal status of the foetus tends to revolve around the issue of abortion, although legal attitudes towards the unborn are also reflected in child destruction and homicide law. Regulation of abortion dates back to the non-legal prohibition against providing a woman with the means of procuring an abortion in the Hippocratic Oath. Present day regulation reflects a State interest in the matter with statutory provisions criminalising abortion. Australian abortion laws fall into three categories of jurisdiction: common law jurisdictions,[31] Code jurisdictions[32] and "statutory reform" jurisdictions.[33] Between these different types of jurisdiction, variation exists with each Australian State or Territory using different criteria to determine the legality of an abortion.[34] For the sake of discussion therefore, it is proposed to concentrate primarily on the Code jurisdictions of Western Australia ("WA") and Queensland. The *Criminal Codes in those States make it unlawful to attempt to procure an abortion or to supply drugs or instruments to facilitate an abortion.[35] The prohibition in these sections must however be read in light of the case law concerning abortion. In order for the abortion to be unlawful, it must be shown that the procedure was not performed "for the preservation of the mother's life" and was not reasonable having regard to the patient's state at the time and all other circumstances of the case.[36] There is a noticeable absence of case law regarding these phrases in WA, however, limited judicial consideration has been given to them in Queensland, which has virtually identical Criminal Code provisions to those in WA. The phrase "the preservation of the mother's life" was held in the Queensland cases of *K v T37* and *Re Bayliss*[38] to have the same meaning as that given in *Re Bourne*[39] and expanded in *R v Davidson.*[40] In *Re Bourne* it was held that if a doctor reasonably found that pregnancy would result in a woman becoming "a physical or mental wreck" then this may justify a finding that an abortion is performed for the purpose of preserving the life of the woman.[41] Liberalising the meaning of "unlawful" even further, Menhennitt J in *R v Davidson* applied the general defence of necessity to abortion. In deciding what is "necessary" and "proportionate," serious danger to a woman's physical or mental health may be considered, and the abortion should not in the circumstances be out of proportion to the danger being averted. The case of *R v Bayliss* and *Cullen*[42] confirmed the adoption of this approach in Code jurisdictions. It should be noted that in the common law jurisdiction of New South Wales, the case of *R v Wald*[43] adopted the *R v Davidson* approach, then expanded it by holding that it would be for the jury to decide whether there existed in the case of each woman any economic, social or medical ground or reason which in their view could constitute reasonable grounds upon which an accused could honestly and reasonably believe there would result a serious danger to her physical or mental health.[44] This approach represents significant gains for women's reproductive rights by inserting economic and social factors into t he necessary and proportionate tests adopted in *R v Davidson*. *R v Wald* was applied in New South Wales in *K v Minister for Youth and Community Services*[45] but has received no comment in the Code jurisdictions. Whilst *R v Davidson* has been adopted in these latter jurisdictions, the case law has been silent as to the adoption, or the extent of adoption, of the approach in *R v Wald*. Despite the existence and legal consideration of abortion laws in Australia, there remains in practice a significant gap between the letter and the practice of the law.[46] On the one hand, the effect of medical developments tends to strengthen the status of the foetus legally, with ever more premature babies being able to be kept alive, therefore decreasing the age of viability and hence increasing the application of the term "a child capable of being born alive" under child destruction law (which overlaps with the statutory prohibition of unlawful abortion).[47] On the other hand it may be argued that, the availability of, and lack of prosecution for, abortion seriously undermines the legal position of the foetus[48]. It is notable that British and Australian courts have consistently refused to recognise both foetal rights prior to birth and the legal personality (or personhood) of a foetus.[49] In the Australian case of *K v T*[50] it was held that a foetus lacks such independent legal personality and rights until it is born. This approach has found approval in *A-G (ex rel Kerr) v T*[51] and, most recently, the re has been a denial of any right to protection against abortion being vested in the foetus.[52] Whilst in *R v Wald* it was argued that society has an interest in the preservation of the human species, and in particular the life and welfare of its members,[53] the focus upon maternal rather than foetal health in the abortion cases cited, together with the reference in *R v Wald* to socioeconomic factors, suggests that society's interest in the foetus may be subsumed to the interests of the mother.[54] This lack of legal rights is also reflected in the law relating to unlawful killing. Under Australian law, a foetus in utero cannot be a victim of homicide, regardless of its gestational age. It is therefore unprotected by the most serious offences designed to protect the sanctity of human life.[55] As the previous discussion illustrates, there is a significant gap between the law regarding abortion as it stands and its enforcement. A number of reasons may account for this phenomenon, for instance, "[t]here is a disparity between situations where according to the law an abortion would (or probably would) be lawful, and situations where such an abortion is actually available to a woman...". The situation is further explained by the unlikelihood of successful prosecution under current law. The tests in *R v Davidson* and *R v Wald* cast a heavy burden of proof upon the prosecution.[56] Non-enforcement of the criminal law regarding abortion is illustrated by the fact that prosecutions for unlawful abortion effectively ceased in Australia in the early 1970s.[57] Although this and, where cases are brought, the wide interpretation of the risk to maternal health are thought to be liberalising factors, the existence and inconsistency of abortion law is still a significant factor in a discussion of prenatal diagnosis and pregnancy termination. This is so because current and proposed laws concerning abortion can have a profound effect[58] on the decision to abort. Issues affecting prenatal decision making are said to relate to the timing of the diagnosis, the nature of the genetic condition (type and severity,) the religious and moral convictions of the mother (or both prospective parents) and societal pressures.[59] For a number of people, their moral stance is greatly influenced by the law (what is illegal is taught to individuals to represent what is "wrong" morally). Further, legal sanctions form an important source of societal pressure and may be seen to represent standards that are socially acceptable (this is not surprising given the democratic nature of our society where legislating is the role of Parliament who in turn are elected by, and are technically the representatives of, "the people"). Thus the decision to terminate a pregnancy following prenatal diagnosis may, at least obliquely, be influenced by the legality of abortion. As outlined above, the focus in determining the lawfulness of abortion has been upon maternal rather than foetal health. However, in the "statutory reform jurisdictions" of South Australia and the Northern Territory, legislative reform has introduced to statutory exceptions to unlawful abortion a "foetal ground" to abort.[60] As such, grounds to abort exist where there is a risk to a pregnant woman's physical or mental health[61] or where there is a substantial risk that the child would be seriously physically or mentally handicapped if the child were born.[62] In all other states, abortion remains criminally unlawful subject to it being necessary to preserve the mother's life or health. Although this provision, especially when interpreted widely as in *R v Davidson* and *R v Wald*, would be likely to sanction abortion where severe genetic defects are diagnosed, the law still remains ambiguous and undefined in this area. As such, the perception of abortion as a criminal act by most women is likely to make the already difficult decision to terminate a pregnancy after abnormal genetic results, even more burdensome. This then calls into question the ethics of a community, or a powerful part thereof, taking a moral stance against abortion and, accordingly, promulgating binding laws to that effect. The issue becomes whether abortion should remain under legislative control, or be left to private conscience (and, in the latter case, whether private conscience should be limited under certain conditions). As illustrated above, abortion law in Australia is inconsistent, uncertain and unenforced. It does not adequately deal with medical technology [and] ... [i]t does not address the social and ethical problems posed by abortion.[63] Abortion laws had their origin in the protection of maternal health. However, as medical technology has progressed, protecting the mother's life by prohibiting abortion becomes nonsensical[64] (particularly in the first trimester). The lack of reform in this area has been explained by political cautiousness, given the electorally sensitive nature of abortion. Although politically expedient to avoid the issue, such political manoeuvring prevents the law from reflecting social attitudes, particularly a s there is an overwhelming consensus that abortion should be legal, inter alia, in the case of birth defects.[65] In opposition to strict legal regulation of abortion, and in the interests of developing a flexibility that would allow new evidence and new technical (and social) developments to affect the communal ethos, it has been argued that: "[e]nforcement of such matters legitimately belongs within the social sanction of specific groups or belief systems. The community that enforces such belief systems in legal form arguably disrupts its own peace."[66] Given the lack of enforcement of the law in this matter and the "proper" place for decisions regarding abortion being in the ethical arena, it is appropriate to turn to an examination of the moral and ethical considerations that will affect prenatal management options. 3. PART 3 3.1 BIOETHICAL AND PHILOSOPHICAL CONSIDERATIONS 3.1.1 The Status Of The Post-Implantation Embryo/Foetus The discussion in Part 2 on the legal status of the embryo/foetus revolved primarily around the "foetal rights" debate, particularly in the context of abortion. Consideration of the status of the embryo/foetus, however, goes beyond the issue of "rights" and involves a number of ethical as well as legal considerations that interact against a backdrop of evolving technologies and social values. "One critical set of values undergoing re-evaluation centers on the relationship between the mother and the foetus."[67] This has largely been due to rapid advances in foetal medicine that allow the foetus to be seen, operated on and even "created". These advances are altering the societal and scientific understanding and perception of the foetus. The emergent trend has increasingly been to consider the foetus as an individual separate from its mother. It is important therefore to evaluate the current status, both bioethically and philosophically. This part will begin with an outline of some of the broader philosophical approaches to the conceptual treatment of the embryo/foetus. These approaches range from the recognition and treatment of post-conception ova as being "fully human,"[68] deserving of the same moral standing as a "life in being", to that of the unborn being "subhuman"[69] with no moral status. The bioethical principles outlined in Part 1 will then be considered in determining the most appropriate model. It will be argued that an intermediate approach is the most realistic model for bioethical decision-making, given current medical knowledge and contemporary social values. As alluded to above, the interests of the foetus are inextricably linked to those of the mother. Where these interests conflict, it is necessary to consider the ethical implications of balancing the interests of the two parties. It is therefore useful to consider the maternal/foetal relationship from a philosophical viewpoint in order to establish a bioethical framework for making such decisions. The resultant model will necessarily rely heavily on the conclusions reached regarding the moral standing of the foetus. 3.2 PHILOSOPHICAL MODELS OF THE STATUS OF THE FOETUS 3.2.1 The "Conservative"/"Fully Human" Approach Considered to be the most extreme "anti-abortion" or "pro-life" position, this view holds that once fertilised, a human ovum has the same moral standing as any other human being. In the course of the ethical debate surrounding embryonic and foetal standing, the "fully human" view has received its earliest support from religious traditions.[70] However, although significant in their own right, and for the impact they have had on the development of contemporary moral and ethical stances, religious arguments will, for the present purposes, be excluded from discussion. The conservative approach is supported by two arguments: scientific/genetic and social.[71] The scientific/genetic argument relies on the fact that the foetus is indisputably genetically human. From the moment of conception, all genetic information is present and all the physical characteristics for life are contained in that newly developed code - no new genetic information is added during the life of that individual.[72] Thus fertilisation is said to mark the spatiotemporal beginning of a new human being.[73] Hence, "[a]n argument that the foetus is not human life biologically does not hold water. The chromosome count is correct, and a sufficient number of other criteria for both "life" and "human" are met to leave no doubt as to this."[74] This approach does not accept the distinction between a newly formed embryo and a viable foetus. Unlike the legal trend[75] of attaching ever greater significance to the foetus as it approaches viability, proponents of the conservative view argue that it is a mistake to confuse independence with separateness. Despite its dependence on the mother, a non-viable foetus is still a separate entity, with its own genetic code and, Steinbock argues, its own moral worth.[76] Whilst the scientific argument emphasises the significance of the fact that an embryo/foetus is genetically human, the second of the supporting arguments for the conservative view attaches moral weight to this humanity from the time of conception. This social perspective is founded on a number of considerations, the notion of potentiality being an important component. It is this "potentiality" argument that will be addressed here. It is said that since the embryo/foetus is potentially, just like us, so we cannot deny it any rights or other forms of protection that we accord ourselves.[77] The fact that a fertilised ovum is not yet "just like us", it is said, is simply a temporal constraint and it would therefore be morally wrong to kill or otherwise prevent it reaching its potential. In its strongest form, this view maintains that a potential human subject should be accorded the moral standing of an actual human subject.[78] The standard objection to the potentiality argument is that it involves a logical mistake: that of equating a "potential person" to an "actual person" and, on this basis, ascribing to the former the same rights as the latter. The logical position is that a potential bearer of the characteristics to which the rights attach, should only potentially bear those rights. It is submitted that the defence offered by Steinbock,[79] that the argument makes only a normative proposal (that potential persons ought to have the same rights as actual persons) does not wholly overcome this logical objection. In the absence of a strong moral reason for this normative approach, the potentiality argument remains flawed. Further, it has been suggested that an early embryo has no greater difference in potential than that possessed by a sperm and egg when separate, but considered jointly.[80] From a statistical viewpoint, three ova placed in a test tube containing sperm, but which have yet to be fertilised, have a greater potential to produce human life than one early embryo in a test tube.[81] Taken to its logical conclusion, the "potential argument" would accord greater moral worth to sperm and a number of unfertilised ova than to a smaller number of early embryos.[82] Given the criticisms outlined above, it is contended that the "potentiality" argument provides strongest support, not for the conservative view, but for the more moderate stances which fall between the two extremes. On this basis, as the embryo develops into a foetus and increasingly acquires the characteristics of a person, so its moral worth and incumbent rights attach. The continuity of human life is another argument raised in support of the conservative view (and may be offered as a moral basis for the normative ascription of rights to fertilised ova under the potentiality approach). It is said that human life is an uninterrupted flow, with new individual life appearing at conception. The life at that point is argued to be every bit as human as its parents, otherwise human life would have a discontinuous break between conception and birth.[83] The social voice of the conservative view, reflecting the continuum of life approach, is apparent in the following declaration of Dr A. Liley, the so-called "father of modern foetology": "Not all of us will live to be old, but we were each once a foetus ... surely if any of us counts for anything now, we counted for something before we were born."[84] However, the mere fact that there is no genetic or physical discontinuity does not seem to support the necessary conclusion that there is no moral change in the status accorded to the embryo and foetus. Further, this same continuity argument has also been used to detract from the view that conception marks the beginning of human life and the attraction of moral worth. An evolutionist may view the beginning of human life as the accumulation of chemicals which first produced life forms, a Theologian may ascribe its beginning to God, whilst the psychologist or philosopher could attribute the origins of human life to the intent of a couple to procreate.[85] Accordingly, it is argued that the only certainty in defining the beginning of human life is the difficulty of how best to define the beginning. Like all life, human life is a gradual and continuously evolving process. It begins when and where you want it to. This depends on your approach and perspective.[86] Various other arguments have been levelled at this conservative approach, the most prominent of which will be outlined in the course of explaining the alternative philosophical models examined below. 3.2.2 The "Personhood"/ "Subhuman" Approach Predictably, the most strenuous objections to the "fully human" approach are raised by proponents of the opposite view, the so-called "subhuman" argument. This position is the most extreme "pro-choice" stance, expounding the belief that an unborn human l acks moral relevance. Under this model, no woman should ever be forced to have a child against her will, irrespective of the condition or gestational age of the foetus. Joseph Fletcher maintains that "no unwanted and unintended baby should ever be born"[ 87]. In direct contradiction to the significance placed on genetic humanity by the conservatives, supporters of the "personhood" view espouse the irrelevance of genetic make-up. These proponents, like Mary Anne Warren,[88] argue that it is not genetic human beings that have any special moral status or right to life, but persons. Implicit in this view is the capacity to become a moral agent - to have not only moral rights, but moral obligations to others.[89] It is the possession of certain characteristics that defines personhood: consciousness, self-consciousness, rationality and language.[90] Since no foetus is self-conscious, this would support the treatment of the unborn as subhuman[91] - on this basis Warren concludes it is not seriously wrong to kill a foetus or embryo (and goes so far as to say that abortion is "morally neutral", comparable to having one's hair cut).[92] This latter view of Warren's alludes to another argument for the absence of moral worth in the embryo/foetus: that the unborn (at least until viability) is no more than an extension of the mother's body.[93] Clearly, medical science would contradict such an assertion in that an embryo has, from the moment of conception, its own sex and genetic blueprint. Whilst the gestational embryo depends on the mother's body, it remains a distinct entity (medically speaking). Returning to the central theme of the "personhood" theory, a primary objection to the use of the "personhood" criteria to ascribe moral worth is that this approach would treat infants as well as the unborn as morally irrelevant. Since babies do not differ significantly from late term foetuses in terms of "person-making characteristics"[94], and do not develop self-consciousness within about the first year and a half of life, infanticide in this view would also be treated as "morally neutral". Of course, the fact that a conclusion is counter- intuitive does not prove the argument wrong.[95] Indeed, Michael Tooley argues that the objection to infanticide is not based on rational principles, but rather on a non-rational taboo resulting from the distressing effect to our sensibilities.[96] Given that bioethics must operate in, and be contextually relevant to, the communities it serves, strong and widespread social opposition must be more persuasive than it would be in pure philosophy. However, a philosophical objection to the "person view" is also offered by Steinbock[97] who claims that Warren fails to explain the moral significance of the psychological and cognitive capacities that attract the rights of "persons". In the absence of such explanation, the person view is seen to be as arbitrary as the genetic-humanity criterion.[98] From the above discussion, it is contended that neither extreme view provides a satisfactory approach to the determination of the ethical standing of an embryo/foetus. An examination and evaluation of more moderate stances is therefore warranted. 3.2.3 The "Moderate" Views The Interest View As we have seen, Steinbock criticises Warren's "personhood" view on the basis that no moral significance attaches to the stated "personhood" criteria. In response to this criticism, Steinbock therefore posits an alternative theory, which states that all, and only, beings who have interests have moral status.[99] This idea of interests hinges on the notion of caring about what is done to one: "[i]t is this notion of mattering that is the key to moral status. ... Whatever reasons we may have for preserving non-sentient beings, these reasons do not refer to their own interests. For without conscious awareness, beings cannot have interests. Without interests, they cannot have a welfare of their own."[100] It is argued that without welfare, nothing can be done for that being's sake, and hence, that it lacks moral standing or status. In this way, Steinbock links the "personhood" characteristic of sentience with that of interests and thus, moral significance. Steinbock is, however, mindful that the concept of interests does not overcome an objection to the "person view", namely that foetuses and embryos are rendered morally irrelevant by this reasoning. In response to this, she calls on the concept of potentiality to augment her interests argument. 3.2.4 Potentiality Revisited The ability of the embryo/foetus to have interests raises both factual and conceptual difficulties.[101] Since non-sentient creatures are assumed incapable of having interests, the factual concern is raised of when a conscious mental state can be said to emerge in human development. Precisely when foetuses attain conscious awareness is controversial, although it is likely that some sensations begin to be experienced during the third trimester of pregnancy. However, Steinbock argues that this does not mean that earlier life forms are morally neutral. She says that as potential persons, embryos and foetuses have a symbolic value that precludes using them in unnecessary experiments or for purely commercial activities. However, this symbolic value is "less important than the actual interests of born human beings in life and health."[102] The appeal to potentiality under this view can be seen to have both medical and ethical support. First, it is medically evident that human development is interconnected with physical development.[103] Not all bodily organs and functions peculiar to humans are apparent at conception, rather they develop gradually through the prenatal period. Further, there is a connection between psychological and physical development. As the central nervous system (CNS) develops and the brain stem emerges, so too does the capacity for thought and sentient experience. On this basis, it may be argued that human personhood develops along with the human body.[104] Similarly, human personality develops over time through a gradual process of development. Conception does not mark the beginning of self-identity. It is argued that one becomes a person as personality develops through relations with others and that prior to this, we are only potentially or emergently human persons.[105] It seems then that Steinbock uses potentiality to justify the symbolic moral value of the pre-sentient embryo/foetus. Recognition is given to the fact that parents and society may value the developing child for its anticipated role in, and contribution to, its family and society. A foetus may also have important symbolic value to those who see it as representing and extending their own existence and/or relationships. From an interest perspective, this recognises, and gives moral weight to, the interests that others may have in the welfare of the unborn. A similar approach is found in the primary/secondary moral worth theory. 3.2.5 Primary/Secondary Moral Worth In expounding the concept of primary or secondary moral worth, Loewy[106] embraces the notion of "interests" (as opposed to "rights") in an examination of foetal status. Arguing against the "subhuman" position, Loewy appeals to biological evidence that satisfies both "human" and "life" criteria to describe the embryo/foetus. This, however, he says is insufficient in itself to endow the unborn with moral worth. Instead, he argues that what we hold as having prima facie rights against wanton destruction are entities endowed with either primary worth (those of value now or in the future again to themselves) or of secondary or symbolic worth (those of value to another in themselves or as representative of something held to be of value).[107] Loewy refutes the conservative argument on the basis of potential, maintaining that a developing entity has the potential to become many things, which are unknowable. Whilst the foetus undoubtedly has the potential for being of primary moral worth (and this carries more moral weight than does the lack of that potential), a zygote also has the potential for being spontaneously aborted, being malformed or becoming a villain.[108] Glover[109] supports this view by maintaining that under the "potential" approach, what is valued is not the embryo itself, but the person it is expected to become. Thus, whilst the potential for possible primary worth is of some significance, the question becomes the extent to which moral weight should be accorded on this basis. Of more certain and existent value at the prenatal stage is the secondary worth of the human embryo/foetus which is derived from its symbolic value both to the family and to society. This latter notion provides a moral basis for legal intervention in the area o f prenatal care. However, the moral weight that this interest is accorded should be balanced against other relevant interests in determining the appropriate role of the legal system in this respect.[110] 3.2.6 The "Social Persons" Perspective A final "moderate view" is expressed by Engelhardt[111] who tackled the problem of assigning moral significance to the embryo/foetus by developing the notion of "social persons". This phrase may be said to describe human beings who are "treated by society as persons even though they are not."[112] An entity's moral standing is expressed in terms of the social sense of its "personhood" by identifying the place of that being in a social relationship with persons possessing full moral status.[113] In the case of the embryo/foetus, it may be treated as a family member and be accorded moral standing in this respect. Engelhardt sees considerable value in protecting anything that could reasonably play the role person and thus strengthen the social position of persons generally.[114] According to this view, "social persons" have rights but no duties, meaning that they are not morally responsible agents, but are accorded the respect associated with them.[115] The "moderate views" outlined above resemble each other in two important respects. First, they all recognise the notion of developing moral status (with neither a complete absence nor full assignation of moral status accorded to the fertilised ovum). Hence, as an embryo develops, so its social and symbolic significance is enhanced, together with its incumbent moral standing. Second, these views all consider the interests of others in determining the status of the embryo/foetus. In each case, the moral significance attached to an entity may, to some degree, be determined by that being's significance to other human beings possessed of moral standing. This second aspect contemplates the importance of the maternal-foetal relationship as a determinant of the "rights" assigned to the implanted embryo. On the basis of the ethical principles outlined in Part 1, it is contended that, from a bioethical perspective, the "moderate views" concerning the moral status of the foetus are to be preferred. This is so given the recognition those perspectives give to the interests of others, thereby embodying the principles of justice, respect for persons and the notion of proportionality. Further, these views acknowledge the biological development of an embryo as an important consideration when assigning it moral status. In this way, philosophical, physiological and social perspectives are incorporated into the determination of the bioethical standing of the developing human. This is particularly important in light of the rate at which genetic technology as i t applies to prenatal care is advancing. The flexibility facilitated by a "moderate" approach would allow new evidence and new technological developments to affect the communal ethos from which, after all, such judgments emerge.[116] 3.3 THE MATERNAL/FOETAL RELATIONSHIP Clearly the perceived status and physical well being of the foetus are inextricably linked to those of its mother.[117] Rapid advances in prenatal diagnosis and therapy are joined with new reproductive-aiding technologies such as in vitro fertilisation and more precise genetic tests. Combined with the burgeoning knowledge of foetal development and the causes of congenital illness, these technologies are altering our perception of the foetus and prevailing values are being challenged by the new biology[118]. Overall[119] observes that the capacity to place the foetus "in full public view" carries with it the ability to affect our moral attitudes towards the embryo/foetus. Genetic technologies have enhanced our capacity to "create", observe, diagnose and treat the embryo/foetus as an individual entity. These technologies have the embryo/foetus as their focus and objective,[120] thereby encouraging the developing child to be viewed as a patient (if secondary) in it s own right. Medical recognition of the embryo/foetus as an entity separate from the mother has led to some concern about the way this will impact upon the mother. It is therefore imperative in any discussion concerning the status of the foetus to consider the impact that this perceived moral status will have upon the interests of the mother. The models used to explain the maternal/foetal relationship are closely related to those addressing the moral and philosophical standing of the foetus.[121] In a recent report commissioned by the Australian Medical Association (AMA), Seymour[122] outlines three models of the maternal/foetal relationship. The first model views the foetus as part of the woman's body, a view consistent with the "subhuman/personhood" approach to the foetus outlined in the previous section. As a framework for legal policy, this model is inappropriate as it is inconsistent with current medical knowledge. As this paper seeks to examine the law for its consistency and ability to deal with current medical technology, it must reject the "body part" approach to the foetus as being biologically inaccurate. The foetus, inclusive of its supportive placenta, is not a biological part of the mother. It is both physiologically and genetically a distinct organism, having its own physiological integrity, genetic code etc.[123] At the opposite end of the scale, the "separate entity" model relies on the biological distinction between mother and child in endowing the foetus with full moral standing. This view, in accordance with the "fully human" approach previously discussed, views the pregnant woman and foetus as two beings, each having a full complement of rights (despite both being in a single body).[124] It has thus been noted by Seymour that the use of the language of rights is an unavoidable consequence of the adoption of the separate entities model[125].The adoption of a rights discourse with respect to the maternal/foetal relationship has been widely criticised, most vociferously by feminist commentators.[126] The argument against reference to foetal "rights" in the context of the maternal/foetal relationship is that it simultaneously generates conflict, devalues the woman, and subjects her to control.[127] Further, both the "separate entities" model and the "body part" view may be criticised as not reflecting women's perceptions of pregnancy. Specifically, some feminist theorists argue that male and female conceptual frameworks differ, the former ascribing to notions of individualism and rights, whilst the latter relies on concepts of connection.[128] A rights discourse, which by its nature focuses on the potentially conflicting rights of the mother and foetus, is therefore inconsistent with the notions of connectedness and interdependence. Bennett observes that the foetal rights debate can easily ignore the experiences of women and their centrality to the issues[129]. Thus, "[t]o underline the importance of connectedness and interdependence is to underline the importance of w omen's perceptions of pregnancy"[130]. It is therefore argued that both of these "extreme" views should be rejected on the grounds that they distort and over-simplify the complex relationship between mother and foetus. Further, they pay insufficient attention to the views of women.[131] A final criticism of the "separate entities" and "body part" models is that they fail to differentiate between the relationship that the foetus has with the mother, and that which it has with other members of society. If one were to ascribe no rights to the foetus, then it would have no moral (or subsequent legal) claim against third parties who inflict harm on it prenatally.[132] Since third parties have no compelling interest to morally justify the infliction of "harm" to the foetus (such as the threat to their bodily integrity), it is submitted that such a distinction is ethically indicated. Similarly, ascription of full rights to the foetus would not distinguish any act of the mother's resulting in harm to the foetus from acts of third parties, notwithstanding her unique interests in respect of the pregnancy. It is submitted that the principles of justice and autonomy require that the mother be permitted to exercise far greater control with respect to determining foetal welfare, given her necessary and compelling interest in the pregnancy. Given the very geography of pregnancy, questions as to the status [and welfare] of the foetus must follow, not precede, an examination of the rights of the woman within whose body and life the foetus exists.[133] Flowing from the criticism of the above two models, we see the basis for the third model, described by Seymour as the "indivisibly linked" view. The key feature of this model is that it centres on the shared needs and interdependence of the mother and foetus. "Connectedness, mutuality and reciprocity" therefore constitute the crucial tenets of the model.[134] Seymour cites Ruddick and Wilcox's description of this model: Mother-and-child is a complex, both bodily and morally: just as we cannot easily say whether pregnancy involves two bodies or only one (in a special expanding state), just so we cannot easily say whether pregnancy involves two sets of overlapping interests or only one set (in a special expanding state). If we allow that there are two sets, then we must recognise that they are mutually dependent to an unusual degree.[135] The "indivisibly linked" model is consistent with the "moderate" views of the status of the embryo/foetus in that it allows for the recognition of the interests or needs of the foetus, without these being absolute. It also enables a flexible approach to be adopted with respect to the differing relationship the foetus has with its mother, as compared to that which it has with the rest of society. Shifting the focus away from rights and onto interests allows a middle ground to be adopted, where the connectedness of the mother to the infant is recognised by the moral weight given to their respective interests. The moral weight of foetal interests will differ when viewed in the context of parties other than the mother. Such an approach is consistent with the principle of justice, particularly the principle of vertical equity, which imposes an obligation to "treat unequals unequally in proportion to the morally relevant inequalities."[136] It may be seen that a mother's special connection to her foetus, and the direct emotional and bodily impact which it has on her, constitute morally relevant considerations. These considerations justify a moral and legal distinction to be drawn between the maternal/foetal relationship and the relationship which a foetus has with the rest of society. It is therefore submitted that, as a basis for legal policy, the "indivisibly linked" model is the most appropriate, being a more refined conceptual and analytical tool than the two more extreme models. This moderate model allows for a legal policy reflective of the philosophical and bioethical principles concerning pregnancy and, in addition, enables greater flexibility in coping with the challenges that advancing genetic technology will create concerning our values and perceptions[137] in respect of the foetus and its mother. Importantly, it transcends the contractarian policy models which focus on rights and duties and which have been criticised by feminist theorists as being particularly inappropriate in respect of reproductive issues.[138] 4. PART 4 4.1 LAW & LEGAL POLICY It was concluded in the previous part that legal policy should reflect the more moderate views concerning the embryo/foetus (both in terms of its intrinsic moral standing, and of its relationship with the mother). It now becomes necessary to examine the law in light of current medical technology to determine the adequacy with which it deals with the issues raised by this technology, and to analyse its underlying policy for consistency with the bioethical models suggested. 4.2 CURRENT TECHNOLOGY Foetal medicine has been characterised by rapid development in recent years, with a tendency to apply rapidly new technology and to put the most recent laboratory and diagnostic methods into medical practice.[139] In order to appreciate the impact the HGP will have upon prenatal diagnosis, one should begin with a basic review of the current and prospective technologies in this area.[140] 4.2.1 Noninvasive Screening Tests The earliest and most traditional methods of prenatal diagnosis involved noninvasive measures such as palpation and auscultation. However, developments in radiology and the advent of ultrasound technologies and particularly realtime sonography have greatly increased our ability to detect foetal malformation, growth retardation and multiple births noninvasively.[141] Radiography enables the foetus to be studied directly to detect any skeletal abnormalities, with amniography and foetography enabling the detection of soft tissue abnormalities.[142] These methods however are only of proven value in later pregnancy, which limits the management options resulting from such diagnosis. Ultrasound facilitates the location of the foetus and placenta and the detection of gross structural abnormalities in the foetus.[143] This process appears, after 25 years of diagnostic use, to be safe and has enjoyed increasing popularity among pregnant women, including those in low risk categories for foetal abnormalities.[144] The diagnostic value of this procedure has been in rapid karyotyping, where amniocentesis is undertaken after suggestive ultrasound findings. Thus ultrasound may suggest the possibility of genetic defects and indicate the use of more invasive diagnostic measures to confirm this. 4.2.2 Isolation of Foetal Cells from Maternal Circulation With the advent of PCR, this particular non-invasive prenatal testing technique has significant diagnostic potential. PCR technology enables the generation of large amounts of genetic material from initially minute quantities. It therefore has the potential to increase the range and accuracy of diagnoses made from isolated foetal cells. The diagnostic potential of this method of testing justifies the separate consideration of it. The test involves the isolation from maternal blood of foetal cells such as trophoblasts which may cross the placenta into the mother's circulation. Because all invasive procedures carry a small but appreciable risk, this technique would be favoured. However, until recently, foetal cells could not be sufficiently isolated to be of use. Although recent techniques have improved the accuracy of the procedure, the specificity and sensitivity of this new test need to be established before it can be decided whether it provides a truly diagnostic or screening test. Should the technique be approved however, current results indicate that it could be applied during the first trimester.[145] Timing is significant because the earlier the diagnosis, the broader the spectrum of management options.[146] The least invasive techniques are bioethically favoured as they involve the least interference with the mother's bodily integrity and the least risk to both mother and foetus. It may therefore be seen that as genetic technology improves to allow increasingly accurate procedures, so the number of prenatal care options requiring less interference with, or risk to, the mother increases. 4.2.3 Invasive Techniques It has been characteristic of the field of prenatal diagnosis that many alternative techniques ... have been developed over the years that offer a more adequate selection, taking gestational age, speed and other factors into account. This is beneficial, but the safety of every new procedure has to be evaluated against the background of the more established techniques.[147] The concerns about safety are particularly acute when considering invasive diagnostic procedures, which include foetoscopy, amniocentesis and chorionic villus sampling (CVS).Foetoscopy is a method which may prove useful in the antenatal diagnosis of congenital malformations. It utilises fibre optics to allow visualisation of the foetus; however, the significant risks it involves indic ate that its use should be limited to high risk pregnant women who have already produced a baby with severe congenital defects.[148] In terms of genetic testing, the most widely used invasive diagnostic procedure is that of amniocentesis. The foetus is enveloped in a membranous sac called the amnion which is filled with amniotic fluid. This fluid, similar in content to extracellular fluid, contains excreted foetal enzymes, amino acids and, importantly, foetal cells derived primarily from the skin and amnion.[149] Using ultrasound guidance, amniotic fluid can be extracted easily after 14 weeks of pregnancy.[150] The advantages of the procedure include its accessibility to patients in many regions of the world (because amniotic fluid can be mailed to specialised laboratories) and a relatively low risk rate of foetal loss (estimated to be 1% or less) or maternal cell contamination. The procedure was also found to potentially encourage women in high risk categories to have another pregnancy[151] by offering greater pregnancy management options , and hence greater reproductive choice, to these women. The major disadvantages of amniocentesis include the need to produce amniotic fluid cell cultures and, importantly, the late results in second trimester pregnancy, when most centres would no longer terminate the pregnancy.[152] Induced abortion at this late stage involves not only considerable medical risks, but also a severe emotional impact on the mother (particularly after the experience of quickening).[153] In response to the risks associated with amniocentesis, the alternative invasive procedure of CVS was introduced. Given that this procedure involves sampling from the larger chorionic cavity, CVS allows for first trimester testing. Although recent trials have indicated that the number of repeat procedures required was significantly higher, and that mosaicism is observed more frequently in CVS,[154] the procedure does have distinct advantages. The significant factors in CVS's favour include earlier and more rapid diagnosis, more privacy in reproductive decision making and earlier reassurance (or an earlier abortion if that is indicated).[155] The HGP's Impact on Prenatal Diagnosis It may be seen from the preceding discussion that the confrontation of foetal maldevelopments by parents and physicians is not new, but because of the better technology, it is more frequent and more precise.[156] The gene mapping component of the HGP is the first step in developing DNA probes that can be used in prenatal diagnosis. The project offers the possibility that the mapping and sequencing of disease genes will accelerate and that diagnostic procedures will become ever cheaper, quicker and more sensitive. As a consequence, it may become feasible to extend testing from high risk pregnancies to the population at large, and to offer prenatal testing for a whole spectrum of conditions.[157] As the HGP assists the earlier, more comprehensive and more accurate diagnosis of genetic diseases, it helps to increase the available management options, including that of pregnancy termination. However, it also involves technologies and raises issues that have not (or may not have) been contemplated by the law. It is therefore incumbent on legislators and policy-makers to consider the implications of the HGP not only for medical practice, but for the regulation thereof. Molecular genetic techniques are widely used to analyse DNA in prenatal diagnosis, allowing early diagnosis from undifferentiated tissues (such as trophoblasts which may become available via foetal cell isolation from maternal blood). As the project continues, an ever-increasing number of conditions may be tested for in this way, thereby replacing considerably more invasive techniques (for example, foetoscopy and foetal liver or muscle biopsy by CVS).[158] Further, technical advances such as PCR have made possible the earliest form of prenatal genetic testing, namely, pre-implantation diagnosis from a trophoblast before embryo transplant. This technique is available where in vitro fertilisation (IVF) is undertaken and may represent a significantly beneficial option for those requiring IVF and for those opposed to terminations of pregnancy (even in the first trimester) but who would undergo assisted reproduction.[159] Various professional, political, and policy stances can influence the degree to which the introduction of more genetic markers [and technologies] into normal prenatal care is accepted, or indeed, encouraged. The question is, then, Will such [technologies] actually improve the quality of prenatal care, and at what cost?[160] This paper aims to address a number of the issues arising from the information and technologies emerging from the HGP from a bioethical and legal viewpoint. This is done to highlight policy considerations that should underpin the legal review made necessary by the HGP and advances in genetic technology generally. 4.3 PRENATAL GENETIC TESTING:- Ethics and Policy In the course of foetal prenatal diagnosis, cells from a foetus are screened as early as possible in pregnancy and, if found to carry a deleterious gene, parents are often given the option to terminate. Dianne Nicol[161] points out that the "application of such procedures will inevitably feed into the ongoing debate over the ethics of abortion". Many objections have been raised against the practice of prenatal genetic testing, a number of which are addressed below. The Hippocratic Oath, as one of the earliest records of the value placed on potential human life, included a pledge given by doctors not to give a woman the means to procure an abortion. It has been argued that this "sanctity of (potential) life" approach forms "the nucleus of all medical ethics"[162] and on this basis, is put forward as a reason to prohibit abortion today. There are, however, convincing reasons why this approach should no longer be adhered to. Moral and ethical standards are necessarily a reflection of societal standards and conditions. The fact that it appears that the status of the foetus was placed so highly as to subordinate the autonomy and self determination of the mother some 400 years before the birth of Christ in ancient Greece, does not make a convincing case for the same status to be accorded to the foetus in a modern day context. Rather, the interests of the mother must play a vital role, thereby reflecting the status of women in present day society. Now these women, the daughters of Eve, scarcely had any rights until the 20th century. The emancipation of women and the rise of feminism gave primacy to the woman's choice...It has now become legal and ethical to terminate pregnancies, often under conditions that are very loosely defined.[163] However, it is important at this stage of the discussion that recognition be given to the fundamental distinction between the ethics of pregnancy termination following prenatal diagnosis and those of abortion for unrelated reasons. This distinction rests largely on the fact that "[m]ost pregnancies that proceed as far as prenatal diagnosis are wanted, even if not originally planned or intended, by the time the procedure is performed. Abortion of a wanted pregnancy differs in a psychological and ... moral quality from abortion of an unwanted pregnancy."[164] Further, "[u]nlike pregnancies aborted for "social" reasons, the abortion for genetic indications generally occurs later in the pregnancy, often after recognition of foetal movement, and requires a physically more demanding procedure."[165] Thus it is submitted that the moral and ethical dilemmas raised by the topic o f pregnancy termination should be viewed in the context of the special considerations involved in prenatal diagnosis. The following discussion will therefore examine the ethics relevant to, and arguments concerning, antenatal genetic testing itself. It will also explore inevitable moral and ethical conundrums involved in abortion on genetic grounds. 4.3.1 Arguments Against Prenatal Testing Of interest is the observation that the choices made based on prenatal diagnosis are not so much new in character as they are in timing. Wertz and Fletcher[166] point out that historically, parents have always made choices (often negative) about non-heal thy children. For centuries, disabled newborns were exposed or left to die, the Catholic Church having made no effort to eradicate this custom. However, the advent of modern medicine, legal and hospital regulations and perinatologists'[167] quest to save life has precluded such practices. This is so even where the extent of medical technology available cannot cure, or even effectively alleviate, the infant's ailment. Hence it is observed that "[f]or most parents, choices are now limited to the preconceptional or prebirth period. Having foreclosed choices that once existed postnatally, medicine now offers new choices prenatally."[168] Prenatal diagnosis is now one of the most frequently used procedures in prenatal care[169] and, as it becomes more common and more effective, the significant ethical dimensions involved need to be addressed. The detection of any defect, particularly of genetic origin, is of considerable consequence for the affected individual. However, it should be recognised that it may also be equally consequential for society and for all who deal with that person (particularly family) throughout life.[170] Ethical debate surrounding prenatal diagnosis, has seen a number of criticisms levelled at the practice, the earliest opposition arising from religious traditions. However, as has previously been explained, religious objections will, for the present purposes, be excluded from discussion. Of the more contemporary arguments against prenatal diagnosis, some significant objections of the previously "hidden voices" of the feminist and disabled communities will be addressed. Firstly however, two fairly common philosophical arguments against genetic testing will be evaluated. 4.3.2 Aborting Beethoven The first and most common philosophical objection is raised by the possibility of denying the birth of potential genius on the basis of a genetic defect. The hypothetical is put that a pregnant woman is tested and found to be carrying a foetus inflicted with inherited syphilis who will, in all probability, develop an associated meningeal deafness. On the basis of this diagnosis, the question of whether to recommend an abortion to the mother is put and, if answered in the affirmative, the response given is that "You have just aborted Ludwig Van Beethoven."[171] With respect to this argument, Harris[172] points out that aborting Beethoven can only seem a good thing to do if we, or the world, or his family, or perhaps even Beethoven himself would have been better off without him. And since this seems an unlikely possibility we seem to be forced to the conclusion that Beethoven should not have been aborted and so neither should other foetuses in related circumstances. Whilst superficially appealing, the argument falls down on a number of bases. One proponent of the approach, George Steiner used it to argue that "what in many cases is a hideous disease, a handicap can also be profoundly creative. Without the kind of [meningeal] deafness which comes from inherited syphilis ... you and I would be sitting here without Ludwig Van Beethoven."[173] Most striking about Steiner's reasoning is that he fails to account for the effect of "nurture", as opposed to "nature". It may certainly be argued that despite disability, or perhaps even because of the upbringing arising out of their handicaps, people have not been precluded from leading creative and productive lives. This is however fundamentally different from asserting that it is the same genetic defect giving rise to a disability that also determines a person's creativity or genius. It certainly cannot be asserted that all genius is solely or even principally drawn from that part of the community suffering from genetic disorders. Further, a decision to abort a foetus is not necessarily consistent with a view that the world would be better off without that individual. As outlined in the previous part, an argument from potentiality can be made in favour of a foetus,[174] but this potential refers only to the potential for human life. Nothing more can be assumed from this stance. In all cases what we are aborting is an actual foetus and the rights or wrongs of that are determined by a consideration of the moral status of the foetus. The foetus we abort will never become anything, and it is nothing but a foetus at the time it is aborted. It is as senseless to bemoan its loss as the loss of a Beethoven as it is to celebrate its loss as the pre-emption of a Hitler.[175] Another ground upon which the argument falters is that of selfish biases. The argument seems to assume that because artistic culture or society as a whole is better off with these individuals' contributions, we are morally justified in requiring their birth. Here, the principles of nonmaleficence/beneficence, autonomy and the theory of common good come into play. Whilst social interests may certainly be taken into account, proportionality dictates that the good to society must be so convincing that it outweighs the risk of harm to individuals directly involved. Where the parents are inclined towards abortion base d on considerations not only of the potential child's quality of life, but also upon their own,[176] the ethical weight of potential benefit to society would be scant in light of the uncertainty of the child's ability to contribute, let alone the value of any contribution. This final point raises the last glaring weakness of the "Beethoven" approach: that it neglects to distinguish between the types and severity of genetic disorders. Quality of life considerations are unavoidably tied to decisions made on the basis of information regarding these sorts of disorders. Certainly, deafness may not warrant abortion and in fact clinical studies indicate a marked disinclination to abort for such mild abnormalities.[177] However, where diagnoses reveal severe disorders, particularly mental ones, the potential for valuable societal contribution (or even interaction) is substantially lessened. Thus, at least to the extent that it applies to severe genetic defects, prenatal diagnosis should not be excluded on the basis of this argument. 4.3.3 Advantageous Disadvantages This philosophical argument is closely related to the preceding one. Germaine Greer offered the opinion that there may be a positive side to pain and suffering which would justify our declining to eradicate it when given the chance. Her argument follows that if a trait is totally maladaptive, then it would not survive. Thus, if a trait has survived, there must be a positive reason for it which we have just never found. Greer believes that humankind should have the advantage of the disadvantages of particular people.[178] Even assuming that this reasoning holds true, at what cost should we wait to discover the benefits society might reap from genetic disorders? Again, the principle of nonmaleficence seems to contra-indicate this approach in the face of severely debilitating, painful and incurable disorders. Like the previous argument, this approach also fails to differentiate between the various types of genetic defects. Further, Greer seems to base her reasoning on the evolutionary theory of natural selection. On this foundation she rests her assumption that the continued existence of a genetic trait indicates its (at least partially) positive nature. However, evolution of a species, particularly more advanced species such as humans, takes place not over decades, but over huge periods of time. Even a completely maladaptive trait would takes hundreds of years to disappear from the human genetic pool. Even accepting that there may, from an evolutionary viewpoint, be positive aspects to a trait, this does not always translate into a positive aspect for the particular species involved. Nature has in-built mechanisms to limit the numeracy and longevity of a species. It may be that very severe deformities are an expression of this restriction since, certainly in the absence of modern medicine, most of the inflicted individuals would die. From a purely evolutionary stance, this is in fact a positive aspect since it prevents the over population of an environment. Abortion then does not alter this particular "positive" aspect; rather, it achieves the same result whilst preventing the unnecessary suffering of the child and its family. The principle of nonmaleficence would strongly sup port this option in the case of terminal conditions being prenatally diagnosed. Harris[179] opines that, before adopting Greer's stance, one would need to be very confident firstly that there is indeed a positive side to the specific disorder in question, secondly that such a positive side is sufficiently important to justify the human suffering required to preserve it, and finally that such positive effects could not be, or are unlikely to be, achievable by other means. In the absence of such confidence I hope that no sane, let alone moral, being would think it worth preserving disability and disease on the off-chance that some good might come of it at some unspecified and unpredictable point in the future.[180] The Eugenic Fear (Some perspectives from Feminist and Disabled Theorists) It has been argued that current bioethical constructs fail to take into account the views and opinions of those groups of society who are most directly associated with prenatal diagnosis and decisions regarding pregnancy termination on the basis of genetic abnormality: women and the disabled community. It is said that "[i]n sum, it appears that ethical and theological, as well as economic arguments have been treated as legitimate and important contributions to the debate, and the views of certain participants ... have been taken seriously, but that critiques based on feminist perspectives have been treated as marginal."[181] Similarly, Newell[182] argues that scientific and ethical discourse has yet to recognise adequately the social construction of disability. Newell further postulates that prenatal diagnosis and pregnancy termination is inherently a technology of oppression and control which serves to devalue the lives of those identified as having disabilities.[183] This latter argument is strikingly similar to those espoused by many feminist critics of genetic testing, who argue that these technologies serve to increase the scope of control exercised over pregnant women's lives and bodies.[184] In essence, the major (but certainly not the only) criticism commonly levelled by these groups at the practice of prenatal diagnosis and genetic manipulation is that its effect is eugenic. Kaplan[185] cites as the most frequently given reason for antenatal testing, that of preventing or ameliorating medical or disabling conditions that are genetically based. Feminist criticism has included the objection that this perceived diagnostic goal contradicts policies for the empowerment of people with disabilities with the selective abortion of foetuses with disabilities. These theorists warn that social constructs that influence people's choices (such as to eliminate those with lives "not worth living") may constitute a eugenic programme.[186] In answer to those who opine that a eugenics programme reminiscent of the Nazi era would not occur in this day and age, the example of China is offered. In December 1993, the Chinese government announced a programme of abortions, forced sterilisation and marriage bans to "avoid new births of inferior quality and heighten the standards" of the country.[187] Feminists have further argued that women may be placed under social pressure to have prenatal diagnosis in a technologic culture in which it is felt to be an "imperative" to undergo prenatal testing, simply because it exists[188] (this is particularly so as testing develops and becomes more routinely used in prenatal care). Moreover, it is argued that given the social construct of disability and the economic burdens that our institutional structure allows to fall on the carer of a disabled child, many women may find the choice of raising a handicapped child so unattractive that it appears tantamount to there being no choice at all regarding abortion. Since these individual "choices" have social consequences, they are therefore said to be eugenic.[189] Additionally, the disabled sector has argued that although the majority approach in bioethical and scientific literature accepts disability as a given, based on dominant socially constructed information. It is upon this basis that a decision may be made to abort.[190] These theorists argue that the better approach is to treat disability as a social construct[191] and to seek management options which reflect this view. The underlying concern from the disabled perspective is the belief that, implicit in the practice of abortion based on genetic characteristics, is the message that it is better not to exist than to have a disability.[192] Whilst something may be said for the social policy points raised in this context, an examination of genetic testing as a prenatal care procedure does not support the view that it is eugenic in effect. Of all abortions performed in Australia, only an estimated 1% occur after prenatal diagnosis.[193] Further, in 95% of pregnancies at increased risk for foetal abnormalities, testing offers reassurance of foetal health.[194] An additional observation has been made that an intention to pursue testing does not necessarily correlate with an intention to terminate in the event of an abnormality.[195] It may therefore be seen that these datainvalidate the notion of prenatal diagnosis as a "seek and destroy mission" and support the [position] that such testing provides information to patients ... which they view as profoundly valuable and which they very much want to have.[196] It appears, therefore, that the bioethical notions of autonomy and veracity would strongly support the practice of antenatal testing. Moving away from responses to eugenic concerns on an empirical basis, trends in genetic counselling a lso strongly contra-indicate prenatal diagnosis being used as a eugenic practice. As the HGP reveals more information about our genetic code, and as the availability and precision of testing for various disorders increases, genetic counselling has been t he focus of increasing attention. Addressing this issue, the Council for Science and Society have said that it must be made clear that the aim of testing is not a eugenic one, but rather to enhance the range of choice and quality of life for individuals and families.[197] Most, if not all, genetic counselling strives to be non-directive, helping individuals understand their options and the present state of medical technology so that they can make informed decisions regarding pregnancy management.[198] The current approach is reflected by the following discourse on genetic counselling: "Patients should be told of the advantages and disadvantages and the various options. ... Termination of pregnancy is one possible outcome and must be discussed, but it should not be made a condition of having a test ... and neither should women be pressurised into having a termination if the foetus is found to be affected. The delivery and birth of an affected child after prenatal testing is not a failure at all; indeed it is a triumph, because here is a child that is, after all, wanted despite its abnormality."[199] According to this view, prenatal testing is designed to facilitate informed reproductive decision making and to offer the widest possible scope of management options to patients. A more rational approach to making difficult choices is possible, with the opportunity to adequately prepare and to provide appropriate medical measures where an affected foetus is kept. Wertz and Fletcher[200] opine that not only the non-directiveness, but also the individual family focus of contemporary genetic coun selling p laces the practice outside the definition of eugenics. It has been argued that there is no other field of medicine in which the need for accuracy is so high, because the consequences of a test may result in pregnancy termination."[201] Where results are ambiguous, decision making becomes even more difficult. The question of "what is too high a risk to take" is a very personal one, based on social, family, emotional and moral considerations.[202] In terms of bioethics, there may, in such situations be s ome beneficence based obligations to the foetus, but those to the mother and to family, as well as the autonomy based obligations to the mother, could be stronger and they might well favour termination of pregnancy.[203] Thus it seems that, at the level of actual decision-making, the choice to abort following abnormal diagnostic results is based on factors other than those intended to improve the gene pool, hence taking the practice outside the meaning of eugenics. Finally, it has been said that to argu e for the inevitability of eugenic regimes of allowing the discovery and use of genetic information, is to rely too heavily on the slippery slope argument.[204] Holtug argues that both logical and empirical arguments fail to support the slippery slope vi ew that eugenic abuses will necessarily occur from the application of genetic technologies.[205] However, in rejecting the slippery slope argument, Holtug is careful to note that this should not suggest a carte blanche approach towards gene therapy (or, it is submitted, towards genetic testing). There are dangers lurking if we are not careful. In order to avoid such dangers, it is necessary to decide on reasonable moral limits for the kind of society we want.[206] It is this last point concerning moral limits for society upon which Hughes[207] centres his response to the eugenic fear. He argues that nothing a democratic society does to forbid itself of genetic technology will have any impact on future or contemporary fascist regimes. Rather, "... the way to stop fascist uses of genetics is to prevent the rise of fascism, not to restrict the emergence of genetic technology."[208] It is contended that this view seems correct. It is not the genetic technology that is inherently objectionable, from a eugenic point of view, but rather its application for the purposes of eugenic practices. These practices may be carried out in the absence of genetic technology, and it is the social constructs which enable this to occur that must be addressed. Applications of genetic technology may include the positive elements of increasing the range of obstetric and perinatal options for women and families faced with the issue of genetic disease. Respect for maternal autonomy and the obligation to avoid harm strongly support these applications of the emerging biotechnology and provide a rationale for continued research such as that conducted by the HGP. Educative responses and regulatory policies should be concerned with eliminating eugenic practi ces and it is in this process that the previously "hidden voices" of feminist theorists and minority views (including those of the disabled community) should be heard. 4.3.4 The Ethics of Economic Considerations Closely linked to the issue of eugenics is the concern over placing either too much or too little importance on the economic aspects of prenatal diagnosis and abortion. On the one hand, it has been argued that there is a social interest in limiting avoid able health care expenses.[209] Ethically, arguments from this perspective find support in the utilitarian principle of seeking a result that will yield the greatest good or welfare for the greatest number of people.[210] Figures used to support this include the observation that the costs involved in diagnosing one handicapped foetus are estimated to be less than one twelfth of the cost of maintaining a resulting disabled child in a public institution for ten years,[211] and that the Australian community spends $2.5 billion each year on caring for people with genetic diseases.[212] However, these figures do not take important intangible costs and benefits into account.[213] Arguments have been made that in the interests of benefiting society, or avoiding harm to others, affected foetuses should be aborted. On the other hand, strong criticism of this approach may be made by the argument that the harm, or risk of harm, involved in some interventions may be of such a nature that those interventions may be absolutely unacceptable no matter how much benefit they promise.[214] The better approach seems to fall somewhere in between these two extremes. Economic evaluation claims neutrality with respect to ethical issues.[215] Other ethical and moral considerations must be taken into account and value attached to economic factors based on the personal belief structure of the patient. This approach should place significant emphasis on respect for autonomy and self determination. From an institutional, as opposed to a patient point of view, economic considerations should only be determinative in the unlikely event that all other ethical criteria are equally balanced. Bioethics recognise the importance of the common good approach, but a doctor's duty lies first with the individual patient. As such, the economic societal interest should be subsumed to the patient's interests, all other things being equal. Having examined the ethical aspects of prenatal testing, it is submitted that the law in respect of embryo biopsy in WA, and of pregnancy termination in Australia, is inadequate to deal with the issues raised by current and emergent genetic technologies. This is particularly so with respect to the inconsistency between the law in the books and the law as it is practiced concerning abortion. Current laws prohibiting abortion reflect a policy that is inconsistent with the law as it is applied. The body of case law concerning abortion has developed in a piecemeal fashion, yielding judgments that seem increasingly willing to extend the scope of the law beyond its intended boundaries. Such inconsistencies in the law and its application are unacceptable frm a policy point of view. It was concluded by Seymour in his report to the AMA that "[t]here is no place for legal intervention designed to impose controls on the behaviour of a pregnant woman when this behaviour is potentially harmful to the foetus. ... At best, the invocation of the law is ineffective and at worst counter-productive."[216] Whilst bioethical principles indicate that it is morally incumbent on a woman to consider the interests of the foetus in making choices concerning prenatal care, this is very different from imposing a legal restriction upon her reproductive choices or from enforcing legally sanctioned interference with her bodily integrity. It is submitted that the law as it stands does not adequately reflect the importance of maternal autonomy, nor does it recognise the unique relationship between mother and foetus (in contrast to the morally different relationship between the foetus and the rest of society). It is therefore submitted that legislative reform is essential in this area, so as to accord adequate recognition to the interests of women in making reproductive choices, and to achieve consistency between the letter of the law and its application. It is suggested that bioethical principles should guide the development of legal policy in the reform process. 5. CONCLUSION: 5.1 SUMMATION AND SUBMISSIONS This paper has examined genetic technology, bioethics and the law in respect of prenatal care, involving the related issues of prenatal diagnosis and pregnancy termination for genetic indications. These issues raise, quite literally, matters of life and death. It has been seen that the law in these areas is wholly inappropriate and fundamentally underdeveloped in Australia. Significant differences exist between the letter of the law and its practical application. To leave the situation in these areas as it stands is clearly bad legal policy. It has been postulated that the options are either to enforce the law as it stands, or to make appropriate legislative reforms. Bioethics and medical practice would seem to favour the latter option. Current law regarding abortion is not adequately equipped to deal with the emergent issues arising out of advances in genetic technology. It has been left to courts to apply the law in an ad hoc manner (at least on the few occasions, given the lack of prosecutorial action, that it has been given any judicial consideration). From a policy point of view, this situation is undesirable as it renders the law arbitrary and uncertain. Although absolute certainty cannot realistically be achieved, legislators should seek to maximise certainty within the pragmatic limits required to achieve the flexibility needed for the law to deal with the variety of situations arising reproductively. Further, it is submitted that an undue burden is being placed on the judiciary, who are supposed to apply legal policy and not to develop it in the absence of legislative or political consideration. The "sanctity of life" doctrine reflected in these areas of law has been shown to be inappropriate, particularly given the advances made in prognostic capabilities by genetic technology. However, given the contentious and politically volatile nature of the topics involved, legislative reform has been avoided by politicians, despite the clear and articulated[217] need for review. It is submitted that, in the face of significant contextual change, maintaining a legislative status quo is as value-laden as re form. Lack of legislative review is not morally neutral; it involves a positive decision not to change despite an alteration in the medical and social context in which the law operates. It is therefore unacceptable that policy-makers remain intransigent in the face of the critical changes that have taken place (both with respect to medical technology and to the status and recognition accorded to women) over recent decades. It is imperative that the law in respect of pregnancy termination be reviewed/reformed so as to reflect a consistent, socially acceptable, and ethically supportable legal policy. Regarding the reform process itself, it is vital that the views of women be recognised in accordance with their peculiar interest in, and centrality to, the issues of pregnancy and childbirth. Any resulting policy should be reflective of these interests. It is also critical that the reform process should involve public debate, expert advice and ethical consideration in order to produce a regulatory framework that will adequately deal with the medical and social issues it covers. A number of issues have arisen in the course of this research which, given the constraints of the paper, have not been addressed, but which require further consideration. These include: the human rights issues arising in respect of genetic technology as it is applied in obstetric and perinatal care;[218] a comprehensive critical analysis of feminist theory as it applies to these areas;[219] and the regulation of the application of genetic technologies emerging from the HGP on an international basis. This paper has sought to highlight areas of inconsistency between bioethics and current Australian law/legal policy, and to indicate where the law is inadequate to deal with the new issues arising out of advances in genetic technology prenatally. However, further attention needs to be given to the appropriate role of law in society and to the appropriate regulatory mechanisms to achieve reform in these areas. GLOSSARY Amniography: Radiography of the amniotic sac after the injection of an opaque, water-soluble solution into the sac. Ataxia: Inability to coordinate the muscles in voluntary movement. Auscultation: Listening to the sounds made by the various body structures as a diagnostic method. Blastocyst: The inner cell mass and a thin trophoblast layer enclosing the early stage of an embryo. Blastomere: One of the cells into which the egg divides after its fertilization. Diploid: Containing twice the normal gametic number of chromosomes, one member of each chromosome pair derived from the father and one from the mother; thee normal chromosome complement (46) of somatic cells in man. Down's Syndrome: mongolism; a syndrome of mental retardation associated with a variable constellation of abnormalities caused by representation of at least a critical portion of chromosome 21 three times instead of twice in some or all cells. Embryo Biopsy: The process of removing tissue from a living embryo for diagnostic examination. Fetography: Radiography of the fetus in utero. Gene Therapy: Treatment of genetic disease by way of gentic manipulation. Genome: A complete set of chromosomes derived from one parent, the haploid number of a gamete. The total gene complement of a set of chromosomes found in higher life forms, or the functionally similar but simpler linear arrangements found in bacteria and viruses. Haploid: The number of chromosomes in sperm or ova (23 in man); which is half the number in somatic (diploid) cells. Karyotyping: Chromosome analysis. Mendelian Inheritance: The theory of inheritance originally outlined by Austrian biologist, Gregor Mendel. He suggested that, in sexually reproducing species, all characteristics are inherited through indivisible "factors" (now identified with genes) con tibuted by each parent to its offspring. The term now tends to refer to the inheritance of conditions/characteristics determined by a single gene. Mesectoderm: That part of the mesenchyme derived from ectoderm, especially from the nerual crest in the cephalic region in very young embryos. Mesenchyme: A primordial embryonic tissue consisting of mesenchymal cells, usually stellate in form, supported in a ground substance. Mosaicism: Juxtaposition in an organism of genetically different tissues, resulting from somatic mutation (gene mosaicism), an anomally of chromosome division resulting in two or more types of cells containing different numbers of chromosomes (chromosome mosaicism). Nucleotides: Organic compound consisting of a purine or a pyridimine base linked to a sugar and a phosphate group. DNA is made up of long chains of nucleotides. Perinatologist: A specialist in the care of the mother and foetus during pregnancy, labour and the first 7 days after delivery, especially when the mother and/or foetus are ill or at risk of becoming ill. Polymerase Chain Reaction: The chain reaction caused by an enzyme catalyzing a polymerization, as of nucleotides to polynucleotides. Polymerization: A reaction in which a molecular weight product is produced by successive additions to, or condensations of, a simpler compound. (Realtime) Sonography: Location, measurement, or delineation of deep structures by measuring the reflection or transmission of high frequency or ultrasonic waves. Syngamy: Conjugation of gametes in fertilization. The alignment on the mitotic spindle of the chromosomes derived from the pronuclei of the sperm and ovum respectively. This term therefore refers to a post-fertilisation stage where the resultant cell has both sets of genetic information (paternal and maternal) but where the chromosomes have not yet combined to form the unique/individual genetic code of the zygote. Trophoblast: The mesectodermal cell layer covering the blastocyst which erodes the uterine mucosa and through which the embryo receives nourishment from the mother; it contributes to the formation of the placenta. Zygote: The diploid cell resulting from union of a sperm and an ovum. Ovum after fertilisation but before it undergoes cleavage to begin embryonic development. Also, the individual that develops from a fertilized ovum. NOTES [1] Windeyer J in *Mt Isa Mines v Pusey* (1971) 45 ALJR 88 at 92. [2] Australian Law Reform Commission (1977) *Human Tissue Transplants, Paper 7*. [3] Marusy K & Swain MS (1989) "A Question of Property Rights in the Human Body" in *Ottawa Law Review* 21(2) 1989: 351 at 378. Although this comment was made in respect of research involving human tissue, it is equally applicable to research concerning human genetic material which constitutes the builing blocks of all human tissue. [4] Related issues, such as genetic therapies/mainpulation, foetal surgery and assisted reproduction, have not been closely examined. [5] Rossiter BJ & Caskey CT (1993) "The Human Genome Project" in *Clinical Obstetrics and Gynecology* 36 (3) September 1993: 466 [6] Council for Science and Society (1989) "The Human Genome - Any Questions?" in *Medico-Legal Journal* 59 (1) 1989: 41. [7] Nicol D (1993) "Mapping the Human Body" in *Alternative Law Journal* 18(5) October 1993: 240. [8] The structure of the project involves human genome projects being undertaken in a number of different countries - with USA leading the initiative - which together form an international network in which the Human Genome and the United Nations Educational, Scientific and Cultural Organisations play key organisational roles. Rossiter & Caskey (1993) supra. [9] Council for Science & Society (1989) supra. [10] Nicol (1993) supra, at 240. [11] Annas GJ & Coyne B (1975) "'Fitness' for Birth and Reproduction: Legal Implications of Genetic Screening" in *Family Law Quarterly* 9 (3) Fall 1975: 463; Spence AP & Mason EB (1987) *Human Anatomy and Physiology* (3rd Ed) Benjamin/Cummings, California: 864 [12] Nicol (1993) supra. [13] Rossiter & Caskey (1993) supra, at 470. [14] Rossiter & Caskey (1993) supra; and Elmer-Dewitt P (1994) "The Genetic Revolution," *Time* January 17, 1994: 20. [15] Elmer-Dewitt P (1994) supra, at 22. [16] Anon. (1993) "Zeroing In on a Breast Cancer Susceptibility Gene" in *Science* (259) January 1993: 622 [17] See Rossiter & Caskey (1993), supra, at 467. [18] See Rossiter & Caskey (1993), supra, at 468. [19] Council for Science & Society (1989) supra. [20] Rossiter & Caskey (1993) supra, at 471-2. [21] In the USA, 3-5% of the budget has been pledged to research these issues. In Council for Science & Society (1989) supra, at 46. [22] Wood C & Westmore A (1984?) "The Significance of the Early Human Embryo - A Broad Perspective" at 3. [23] Ibid. [24] Fletcher JC & Anderson WF (1992) "Germ-Line Therapy: A New Stage of Debate" in *Law, Medicine & Health Care* 20 (1-2) 1992: 26. [25] Sources: Fletcher & Anderson (1992) op cit; Kennedy & Grubb (1989) *Medical Law: Text and Materials*. See also Gillon R (1995) "Medical Ethics: Four Principles Plus Attention to Scope" in 14(3) *Monash Bioethics Review* (July 1995): 23; and Macklin R (1990) "Ethics and Human Reproduction - International Perspectives" in *Social Problems* 37(1) February 1990: 38. [26] Fletcher & Anderson (1992) op cit at 30. [27] See Macklin (1990) supra; and Moreland & Geisler (1990) supra. [28] Ibid. [29] Kennedy & Grubb (1989) op cit. [30] Gillon R (1995) "Medical Ethics: Four Principles Plus Attention to Scope" in 14(3) *Monash Bioethics Review* (July 1995): 23 at 25. [31] Victoria, New South Wales and the Australian Capital Territory. See Cica N (1991) "The Inadequacies of Australian Abortion Law" in *Australian Journal of Family Law* 5 (1) March 1991: 37 at 38. [32] Queensland, Western Australia and Tasmania. Id at 40. [33] South Australia and Northern Territory. Id at 41. [34] Cica (1991) supra. [35] ss 199, 200, 201 *Criminal Code* (WA); s224, 225, 226 *Criminal Code* (Qld). [36] s259 *Criminal Code* (WA); s282 *Criminal Code* (Qld). [37] [1983] 1 Qd R 396 at 398. [38] Supreme Court of Queensland (unrep. No 376 of 1985) per McPherson J. [39] [1938] 3 All ER 615. [40] [1969] VR 667. [41] Supra, at 619, per MacNaughten J. [42] (1986) Qld Lawyer Reps 8 at 45. [43] (1972) 3 DCR 25, per Levine J. [44] Ibid at 29, emphasis added. [45] [1982] NSWLR 311. [46] Cica N (1991) "The Inadequacies of Australian Abortion Law" in *Australian Journal of Family Law* 5 (1) March 1991: 37 at 47-49. [47] Id at 43-45. [48] Prosectutions for unlawful abortion effectively ceased in Australia in the early 1970s (which explains the under-development of case law in the area). This has meant that abortion is available virtually on demand, with a number of "free standing" abortion clinics established and operating in a number of metropolitan areas. See Cica N (1991) supra, at 47-48. [49] Anon (1989) "Abortion - The judiciary and the Legislature" in *Reform* (56) October 1989: 200. [50] (1983) 1 Qd R 396. [51] (1983) 1 Qd R 404 at 406-7. [52] *F v F* (1989) 13 Fam LR 189. [53] Supra, at 28. [54] Cica N (1991), supra, at 59. [55] Id at 56. [56] Id at 47-8. [57] Ibid. [58] Alta Charo R (1993) "Legal and Regulatory Issues Surrounding Carrier Testing" in *Clinical Obstetrics and Gynecology* 36 (3) September 1993: 569 at 584. [59[ Pryde et al (1993) supra, at 503. [60] Cica N (1991) supra, at 41-2. [61] s 82a(1)(a)(i) *Criminal Law Consolidation Act 1935* (SA), amended in 1969 to include s 82a. [62] Id, s 82a(1)(a)(ii). [63] Cica N (1991), supra, at 66. [64] See Loewy MD (1989) *Textbook of Medical Ethics* Plenum Publishing Co, New York at 157-159. [65] Surveys indicate that between 81-90% of Australians hold this view. Cica N (1991) supra, at 67. [66] Loewy (1989) supra, at 166. [67] Blank RH (1993) "Maternal-Fetal Relationship: The Courts and Social Policy" in *The Journal of Legal Medicine* 14: 73 at 73. [68] Moreland JP & Geisler NL (1990) *The Life and Death Debate: Moral Issues of Our Time*, at 25. [69] Ibid. [70] This support continues most notably in the Judeo-Christian tradition by the Catholic Church. In his 11th encyclical, Evangelium Vitae (The Gospel of Life), Pope John Paul II recently enunciated his most solemn condemnation yet of the taking of life by abortion & euthanasia; on embryonic experimentation and on contraception. See *The West Australian* (31 March 1995, p19); (1 April 1995, p19). [71] Moreland JP & Geisler NL (1990) *The Life and Death Debate: Moral Issues of Our Time* at 34; and Steinbock B (1992) *Life Before Birth: The Moral and Legal Status of Embryos and Fetuses* at 46. [72] Moreland JP & Geisler NL (1990) *The Life and Death Debate: Moral Issues of Our Time* at 34. [73] Steinbock B (1992) *Life Before Birth: The Moral and Legal Status of Embryos and Fetuses* at 46 [74] Loewy (1989) supra, at 161. [75] Particularly in the American landmark abortion decision of *Roe v Wade*. [76] Steinbock B (1992) *Life Before Birth: The Moral and Legal Status of Embryos and Fetuses* at 47. [77] Buckle S (1988) "Arguing from Potential" Bioethics 2:3 (July 1988) at 227. [78] Steinbock B (1992) *Life Before Birth: The Moral and Legal Status of Embryos and Fetuses* at 59. [79] Ibid. [80] Singer & Wells (1984) cited in Walters WAW (1984) "Personhood and the Human Embryo" at 12. [81 The former having about a 30% chance of resulting in a baby, the latter having only a 10% likelihood. In Wood C & Westmore A (1984?) "The Significance of the Early Human Embryo - A Broad Perspective" at 28. [82] Ibid. [83] Moreland JP & Geisler NL (1990) *The Life and Death Debate: Moral Issues of Our Time* at 36. [84] Liley AW (1972) "The Foetus in Control of His Environment" in Hilgers TW & Horan DJ (ed) *Abortion and Social Justice*; Sheed & Ward, New York at 35-6. [85] Wood C & Westmore A (1984?) "The Significance of the Early Human Embryo - A Broad Perspective" at 25. [86] Id at 26. [87] Quoted in Moreland JP & Geisler NL (1990) *The Life and Death Debate: Moral Issues of Our Time* at 26. [88] Warren MA (1973) "On the Moral and Legal Status of Abortion" in *The Monist* 57 (1973). [89] Walters WAW (1984) "Personhood and the Human Embryo" at 6. [90] Steinbock B (1992) *Life Before Birth: The Moral and Legal Status of Embryos and Fetuses* at 51-2. [91] Moreland JP & Geisler NL (1990) *The Life and Death Debate: Moral Issues of Our Time* at 27. [92] In Steinbock B (1992) *Life Before Birth: The Moral and Legal Status of Embryos and Fetuses* at 52. [93] Moreland JP & Geisler NL (1990) *The Life and Death Debate: Moral Issues of Our Time* at 28. [94] Steinbock B (1992) *Life Before Birth: The Moral and Legal Status of Embryos and Fetuses* at 52. [95] Id at 53. [96] Ibid, citing Tooley M (1983) *Abortion and Infanticide*; Clarendon press, Oxford. [97] Id at 53-4. [98] Ibid. [99] Steinbock B (1992) *Life Before Birth: The Moral and Legal Status of Embryos and Fetuses* , Chapter 1. [100] Id at 5. [101] Id at 40. [102] Id at 40-1; see also Chapters 5-6. [103] Moreland JP & Geisler NL (1990) *The Life and Death Debate: Moral Issues of Our Time* at 31. [104] Ibid. [105] Ibid. [106] Loewy MD (1989) *Textbook of Medical Ethics*, Chapter 11. [107] Id at 162. [108] Id at 163 [109] Glover (1982) cited in Walters WAW (1984) "Personhood and the Human Embryo" at 14. [110] This issue will be dealt with more fully in Part 4 of this paper. [111] Engelhardt (1982) cited in Walters WAW (1984) "Personhood and the Human Embryo" at 13. [112] Id at 13. [113] Id at 14. [114] Ibid. [115] Ibid. [116] Loewy MD (1989) *Textbook of Medical Ethics*, at 165. [117] See Blank RH (1993) "Maternal-Fetal Relationship: The Courts and Social Policy" in *The Journal of Legal Medicine* 14:73. [118] Id at 73. [119] Overall C (1986)b "Pluck a Fetus from its Womb: Attitudes Toward the Embryo/Fetus" in *University of Western Ontario Law Review* (24) 1986: 1. [120] Blank (1993) supra, at 193. [121] It should be noted that discussion here will necessarily exclude the pre-implantation embryo. [122] Seymour J (1995) Fetal Welfare and the Law: Report of Inquiry Commissioned by the AMA; Ch 4 *Theoretical Considerations* at 46-57. [123] Kluge (1988) cited in Seymour (1995) supra, at 48. [124] Seymour (1995) supra, at 50. [125] Ibid. [126] See for example: Bennett B (1991) "Pregnant Women and the Duty to Rescue: A Feminist Response to the Fetal Rights Debate" in *Law in Context* 9 (1) 1991: 70; Overall C (1986)b "Pluck a Fetus from its Womb: Attitudes Toward the Embryo/Fetus" in *University of Western Ontario Law Review* (24) 1986: 1; and Seymour J (1995) *Fetal Welfare and the Law: Report of Inquiry Commissioned by the AMA*; Ch 4 *Theoretical Considerations* at 50-55. It should, however, be recognised that feminist thought is widely divergent, so that no single view can be entirely representative. As alluded to in the Introduction, it is impossible, within the constraints of this paper, to canvass the full range of femminist views. Rather, cited examples of feminist responses to the issues raised illustrate some of the more commonly expressed views. [127] Seymour (1995) supra, at 52. [128] Gilligan (1982) and West (1988) cited in Bennett (1991) supra, at 86. [129] Bennett (1991) supra, at 87. [130] Seymour (1995) supra, at 53. [131] Id at 49 & 54; and Bennett (1991) supra, at 87. [132] Seymour (1995) supra, at 46. [133] Gallagher J (1989) "The Fetus as Patient" cited in Seymour (1995) supra, at 47. [134] Seymour (1995) supra, at 55. [135] Ibid. [136] Gillon (1995) supra, at 25, emphasis added. [137] See Blank RH (1993) "Maternal-Fetal Relationship: The Courts and Social Policy" in *The Journal of Legal Medicine* 14:73 and Overall, C. (1986)b "Pluck a Fetus from its Womb: Attitudes Toward the Embryo/Fetus" in *University of Western Ontario Law Review* (24) 1986: 1 [138] See Diprose R (1994) *The Bodies of Women: Ethics, Embodiment and Sexual Difference*, Routledge, London. [139] Holzgreve W, Nippert I, Gaenshirt-Ahlert D, Schloo R & Miny P (1993) "Immediate and Long-Term Applications of Technology" in *Clinical Obstetrics and Gynecology* 36 (3) September 1993: 476 and Rodeck CH (1992) "Ethical Dilemmas in Fetal Medicine" in *Medico-Legal Journal* 60(3): 188. [140] An outline of the most common techniques is produced in Table 3, Appendix. Source: Pryde PG, Drugan A, Johnson MP, Isada NB & Evans MI (1993) "Prenatal Diagnosis: Choices Women Make About Pursuing Testing and Acting on Abnormal Results" in *Clinical Obstetrics and Gynecology* 36(3) September 1993: 497 at 500. [141] Holgreve et al (1993) supra. [142] Annas GJ & Coyne B (1975) supra, at 470. [143] Ibid. [144] Holgreve et al (1993) supra. [145] Id at 480. [146] Pembrey ME (1992) "Prenatal Diagnosis - Hopes and Fears" in *Medico-Legal Journal* 62 (1) 1992: 7 at 14. [147] Holgreve et al (1993) supra, at 480. [148] Annas GJ & Coyne B (1975) supra, at 470. [149] Ibid. [150] Because the amniotic sac is small in relation to the chorionic cavity in the first trimenter, the withdrawal of sufficient fluid for cell culture in amniocentesis is contra-indicated. See Holgreve et al (1993) supra, at 480-1. [151] Ibid. [152] If results are only able to be obtained late in the pregnancy, when many health care centres refuse termination, the management options and choices of women with affected foetuses are limited. [153] Ibid. [154] Id at 481-2. [155] Pryde et al (1993), supra. [156] Holgreve et al (1993) supra, at 476. [157] Council for Science & Society (1989) supra, at 42. [158] Holgreve et al (1993) supra, at 482. [159] Id at 483. [160] Nolan K (1992) "First Fruits: Genetic Screening" in *Special Supplement, Hastings Center Report*, July/August 1992: S2 at S2. [161] Nicol (1993) supra, at 240. [162] Dalgety JD & Pryor M (1986) "Law and the Biological Revolution: Changes in attitude, behaviour, medical standards and technology" in *New Zealand Law Journal* January 1986: 25 at 26. [163] Rodeck CH (1992) "Ethical Dilemmas in Fetal Medicine" in *Medico-Legal Journal* 60(3): 188 at 193. [164] Wertz DC & Fletcher JC (1993) "Feminist Criticism of Prenatal Diagnosis: A Response" in *Clinical Obstetrics and Gynecology* 36(3) September 1993: 541 at 552. [165] Hassed SJ, Miller CH, Pope SK, Murphy P, Quirk G and Cunniff C (1993) "Perinatal Lethal Conditions: The Effect of Diagnosis on Decision Making" in Obstetrics and Gynecology 82(1) 1993: 37. [166] Wertz & Fletcher (1993) supra. [167] However, Kuhse, Singer & Singer's research has indicated that doctors do not necessarily support the "sanctity-of-life" doctrine and that many have made decisions not to treat genetically defective neonates. See Kuhse H, Singer P & Singer C (1983) "The Treatment of Newborn Infants with Major Handicaps in *The Medical Journal of Australia* Vol 17 (1983): 274. [168] Ibid at 545-6. [169] Id at 547. [170] Harris J (1991) "Ethical Aspects of Prenatal Diagnosis" in Drife JO & Donnai (Eds) (1991) *Antenatal Diagnosis of Fetal Abnormalities*; Springer-Verlag, London. [171] A similar scenario may be conjured up using Muscular Dystrophy (or, as is believed to be the more likely ailment, pyknodystosis) and Toulouse Lautrec. [172] Id at 283. [173] Steiner G on BBC TV, *The Heart of the Matter* (on genetic engineering) 22 October 1989. See Harris (1991) supra. [174] Loewy (1989) supra. [175] Harris (1991) supra, at 283. [176] Wertz & Fletcher (1993) supra, at 554. [177] Pryde et al (1993), supra. [178] Greer G on BBC TV, *The Heart of the Matter* (on genetic engineering) 22 October 1989. See Harris (1991) supra. [179] Harris (1991) supra. [180] Id at 285. [181] Gaze B (1992) "Controlling Medical Science: Reproductive Technology, Infertility and the Position of Women" in *Law in Context* 10(2) 1992: 29. [182] Newell C (1992) "Some Ethical Issues Associated with Genetic Engineering for People with Disabilities" in *Australian Disability Review* 2 - 1992: 72-86; and Newell C (1994) "A Critique of the Construction of Prenatal Diagnosis and Disability" presented to "Ethical Issues in Prenatal Diagnosis and the Termination of Pregnancy" a Conference of Monash University (30 August, 1994). [183] Newell (1994) supra, at 2. [184] See for example Gallagher (1985) and Karpin(1992) cited in Seymour (1995) supra, at 52. [185] Kaplan D (1993) "Prenatal Screening and Its Impact on Persons with Disabilities" in *Clinical Obstetrics and Gynecology* 36 (3) September 1993: 605. [186] Wertz & Fletcher (1993) supra. [187] Elmer-Dewitt (1994) supra. [188] Wertz & Fletcher (1993) supra. [189] Ibid. [190 Newell C (1994) supra. [191] See Newell C (1994) supra; and Kaplan (1993) supra. [192] Kaplan (1993) supra, at 610. [193] Wertz & Fletcher (1993) supra, at 552 [194] Hassed et al (1993) supra. [195] Pryde et al (1993), supra. [196] Id at 499. [197] Council for Science and Society (1989) supra, at 45. [198] Wertz & Fletcher (1993) supra. [199] Rodeck (1992) supra, at 191. [200] Wertz & Fletcher (1993) supra, at 549. [201] Rodeck (1992) supra, at 193. [202] Wertz & Fletcher (1993) supra. [203] Rodeck (1992) supra, at 194. [204] Holtug N (1993) "Human Gene Therapy: Down the Slippery Slope?" in *Bioethics* 7(5) 1993: 402. [205] Ibid. Whilst a full review of Holtug's resoning is not possible within the constraints of this paper, the reader is referred to his article. [206] Id at 419. [207] Hughes J (1994) "Embracing Change with All Four Arms: A post- Humanist Defense of Genetic Engineering" on Internet [208] Id at 7. [209] Smith GP (1984) "Eugenics and Family Planning: Exploring the Yin and Yang" in *University of Tasmania Law Review* 8 (1) 1984:4 [210] Macklin R (1990) "Ethics and Human Reproduction - International Perspectives" in *Social Problems* 37(1) February 1990: 38 at 40. [211] Smith (1984) supra, at 18. [212] Skene L (1989) "Genetic Disorders and Embryo Testing" in *Legal Service Bulletin* 14(3) June 1989: 106. [213] Henderson JB (1991) "Economic Aspects of Prenatal Diagnosis" in Drife JO & Donnai (Eds) (1991) *Antenatal Diagnosis of Fetal Abnormalities*; Springer-Verlag, London. [214] Somerville MA (1983) "Joinder of Issue at the Frontiers of Biomedicine: A Review Essay on 'Genetics, Ethics and the Law'" in *University of NSW Law Journal* 6(1) 1983: 102 at 104. [215] Henderson JB (1991) supra, at 271. [216] Seymour J (1995) *Fetal Welfare and the Law: Report of Inquiry Commissioned by the AMA* at "Summary and Recommendations" xiv. [217] See Cica N (1991) "The Inadequacies of Australian Abortion Law" in *Australian Journal of Family Law* 5(1) March 1991: 37. [218] See for example Brody EB (1993) Biomedical Technology and Human Rights; UNESCO, Paris and Dartmouth, England. [219] For some discussion, see Overall C (1986)a "Reproductive Ethics: Feminist and Non-Feminist Approaches" in *Canadian Journal of Women and the Law* 1(2) 1986: 271; and Holmes HB & Purdy LM (1992) *Feminist Perspectives in Medical Ethics*, Bloomington, Indiana University Press. 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