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Summary

Introduction

The law as it applies to genetic technologies and their therapeutic applications is complex and constantly evolving. The complexity stems in part from the way that genetic health issues span so many and such disparate areas of legal regulation: from therapeutic goods to discrimination; from privacy laws to consent over future use of information; from Indigenous rights to private ownership and cloning. However, recent developments in genetic knowledge have further complicated the legal response to genetics, as the contextual and constructed nature of the gene is brought to the fore. In particular, epigenetics has begun to explore the myriad ways in which genes interact with the environment, including, for example, the social environment in the form of health.

From a legal perspective, many questions arise, such as where do we draw the line between what is considered a medical problem and what is considered a social or legal problem? How will law determine the responsibility of those ‘diagnosed’ with genetic conditions that undermine their capacity to make decisions? How will the law respond to the claim that someone has committed a crime because they have a particular genetic profile? Indeed, some geneticists have – controversially – claimed that they have identified a gene for criminality. How will society perceive its responsibility to respond if the problems being addressed are viewed as genetically determined? Conversely, what protections will law offer to avoid discriminatory outcomes for individuals identified with undesirable genetic traits? Genetics has significantly expanded the ambit of health law, requiring law to respond to the biological attributes of legal actors in novel ways. In order to explore these questions, the first part of the chapter provides a brief overview of recent historical developments in relation to genetic knowledge, before moving on in the second part to examine the relationship between genetics, race and indigeneity. The final part examines a number of current and contested areas of genetics-related regulation, including testing, discrimination, privacy, biobanks and property, as well as genetic modification and gene therapy.

Historical overview

Over the last 30 years there has been a growing reliance on genes and gene sciences as the key to understanding why we are the way we are. Genes have been called on to explain not just medical conditions or ‘genetic illnesses’, but also social problems and challenging behaviours.

Summary

Introduction

Approximately 440,000 deaths occur annually in Australia as a result of decisions to withdraw or withhold life-sustaining treatment from both competent and incompetent adults. The consequences for doctors who misapprehend the law or misinterpret their legal responsibilities may be criminal charges for murder or manslaughter if treatment is withheld inappropriately, or assault charges, or civil actions, or disciplinary and coronial proceedings, if treatment is provided without appropriate consent or authorisation. The issue is not purely a legal one. Conflict among family, friends, supporters, doctors and other health professionals during end-of-life decision-making is associated with adverse consequences for everyone involved.

Whether, and how, to regulate the provision of end-of-life healthcare has emerged as a prominent theme in law and policy debates in recent decades. There is an ongoing discussion about the ethical, philosophical, theological and practical dimensions of dying. In the midst of this debate, the courts are required to resolve the particular disputes that come before them. The disputes reveal changing social attitudes towards end-of-life decision-making and care, and the struggle to come to terms with sophisticated medical technology and the consequent relocation of death from the home to the hospital. They also reveal a changing regulatory landscape and the impact of international human rights principles on this area of law.

End-of-life care raises questions about how the law should engage with concepts such as the quality of life, medically futile treatment, the distribution of scarce medical resources, who should be entitled to make end-of-life decisions and, if so, on what basis. The current position in law is that a distinction is drawn between: (1) withdrawing and withholding life-sustaining treatment at the end of life; and (2) actions that are intended to cause death, such as (active) euthanasia and assisted suicide. Within these two categories, the rules that apply with respect to individuals who have the capacity to make their own decisions are different from those that apply to those who do not. In either situation, the legal responsibilities of all parties warrant scrutiny, both because the determination of capacity or competence is uncertain and because the law in many jurisdictions arises at the interface of common law, statutory provisions and practice guidelines, where the legal landscape is often complex, opaque and in flux.

Summary

Introduction

Over twenty years ago, a landmark study which examined the extent of (preventable) harm suffered by patients in the Australian health system was published. The findings from the study led to a series of governance initiatives at both state and Commonwealth levels to address the issue as part of an emerging national agenda to enhance safety and quality in healthcare. The first part of this chapter provides an overview of that agenda, focusing on key terms, institutions and recent initiatives. The second part examines what patients want when things go wrong in healthcare provision, as well as what redress options may be open to them. The final part provides an overview of a range of redress options that are available, before briefly reviewing select reform in the area.

The governance of safety and quality in healthcare in Australia

Key terms

By way of background, it is useful to define some of the key terms that are often used in this area. The term ‘safety and quality in healthcare’ refers to a wider health system agenda in which aspects of safety and quality may be measured in a number of ways. Broadly speaking, the term means the extent to which a health service organisation produces a desired outcome. More specifically, it can be used to assess whether a health system is performing at an appropriate level to improve individual and population health and wellbeing.

In this chapter, we are particularly interested in ‘patient safety’, which has been defined as:

The reduction of risk of unnecessary harm associated with health care to an acceptable minimum. An acceptable minimum refers to the collective notions of current knowledge, resources available and the context in which care was delivered, weighed against the risk of non-treatment or other treatment.

Adverse events and outcomes occur when there is unsafe or poor quality healthcare. ‘Adverse events’ are defined as incidents in which harm resulted to a person receiving healthcare. They include healthcare-associated infections; problems with medication and medical devices; inappropriate use of blood products; falls resulting in injuries in healthcare settings; and problems with medication and medical devices. Some of these adverse events are preventable.

Summary

Introduction

In recent decades there has been an upsurge in interest in the formation and development of biobanks. This has been for two main reasons: first, to promote research that will better understand the risk factors underlying disease; and second, to facilitate the translation of scientific research into healthcare practice, particularly in the areas of pharmacogenomics and personalised medicine. Traditionally, collections of human tissue samples and related information were created for the purposes of treatment and diagnosis, and they continue to exist. However, what is new is the creation of large-scale entities involving systematic (and automatised) approaches to the collection of human tissue and related data. This has opened up new opportunities for data linkage and data mining, both nationally and internationally. This chapter explores key definitions, institutions and concepts in biobanking. A number of ethical, legal and social concerns that have arisen in this context are also examined, with a particular focus on the topics of consent, privacy and confidentiality, property rights and commercialisation.

Key definitions

The term ‘biobanks’ is commonly used to describe a range of entities that store human tissue (or what are referred to as ‘human biospecimens’ in this context), as well as genetic information and other health-related information collected from participants. For present purposes, we shall refer to human biospecimens and related information collected by biobanks as ‘material’. In using the term ‘biobanks’, however, we note that there are also other terms in use which reflect the origin, type and reasons for the material being stored. They include ‘repositories’, ‘tissue banks’, ‘databanks’ and ‘human genetic research databases’. It is also important to note that biobanks have also been established for purposes other than health and medical research, such as for forensic purposes (for example, DNA databases).

Key institutions

A diverse range of biobanks operate in Australia. They operate largely autonomously, with each biobank having independent processes to manage its operations and deal with any requests for material from researchers or other third parties. Currently, a lack of national coordination in the field has resulted in a duplication of effort. It has led to different processes being applied to the same diseases using a range of protocols, as well as inadequate linkage between data collected from clinical trials and that resulting from laboratory-based research.

Summary

Introduction

It is essential that, before a doctor performs any treatment on a patient, the doctor first obtains a valid consent to do so. Treatment performed in the absence of consent gives rise to actions in various areas of the law. Australian common law has traditionally narrowed the remit of contractual and intentional tort actions. This has meant that, on the whole, a patient on whom treatment was performed without consent was more likely to sue in negligence than in contract or intentional torts. Recent legislative enactments restricting the legal action in negligence have led to renewed interest in the applicability of contract and intentional tort actions. While actions in medical negligence are examined in more detail in Chapter 11, this chapter aims to provide an overview and understanding of the role and operation of consent in contract and intentional torts.

The first part of this chapter outlines some general principles of consent and how this operates in contract law. The second part provides an overview of relevant intentional torts, analysing how consent operates in circumstances that would otherwise be a battery. This is done through examining the elements of a valid consent, focusing in particular on the troubling area of competency involving children. Competency involving those with mental illness and/or intellectual disability is examined in more detail in Chapter 10.

Consent: general principles

The concept of consent lies at the heart of the lawful provision of medical treatment. It is axiomatic that a competent patient may refuse consent to any treatment, even if doing so will result in adverse effects, even death. This is notwithstanding the very strong state interest in preserving life. In terms of doctor-patient interactions, Alderson and Goodey have pointed out that consent is understood differently by various disciplines and professions, and also in various theoretical models, including the following:

Summary

Introduction

The ability of law to influence health at the population level has long been recognised. In the 19th century, a range of policy and legislative initiatives were introduced in England and Wales. These proved to be highly influential in the subsequent development of the law in relation to public health in Australia. In England, the consequences of rapid industrialisation and urbanisation, such as overflowing cesspools leading to typhoid and cholera epidemics, were associated with life expectancies as low as 15 years. This led the government of the UK to adopt the Public Health Act 1848, which promoted the improved management of water, sewage and rubbish. Similar legislation was subsequently enacted in the Australian colonies. Early public health laws targeted sanitation and noxious environments. They created inspection and notification provisions, with the aim of controlling infectious disease and setting safety standards regarding food, drugs and occupational health. This relatively narrow legal focus persisted throughout much of the 20th century.

Although in recent decades a number of health issues, including tobacco use and HIV/AIDS, have generated renewed interest in the intersection of law and public health in Australia, there has been only limited policy and political engagement regarding the role of public health law more generally. Currently, Australia faces a number of public health challenges that demand multifaceted legal responses. Law is increasingly being looked to as a tool that can help address such challenges. Beyond its traditional focus on sanitation and safety standards, law is considered capable of altering environments and influencing behaviour to improve population health.

Examination of law's role in public health is a broad topic, worthy of a book in its own right, and this chapter therefore engages with only key aspects of the field. The chapter critically examines the relationship between the law and public health in Australia. The first part examines the problematic issue of defining ‘public health law’, as well as its sources and scope. The second part examines key principles and institutions underpinning public health law, while the third part focuses on a number of examples which highlight the (potential) role of law in influencing and promoting public health in Australia.

Summary

Introduction

The nineteenth century brought with it a new world of readers. It generated a wide and variegated readership that contributed to the public sphere in ways that had not been imagined in previous centuries. Mass literacy had been achieved across Europe, or parts of it at any rate, by the 1860s. Globally this was also true of China and Japan, but nowhere else had literacy reached such heights as in European societies. In this European context Ireland may fairly be ranked alongside France and Belgium in the second tier of developed Europe by the end of the nineteenth century. The change had begun pre-Enlightenment, but the eighteenth century, across Europe, was still a time when advanced reading, elongated schooling and proficient writing were all markers of middle-class to elite status. By the end of the nineteenth century access to formal and informal schooling had deepened and widened, and permeated down to the semi-skilled and labouring classes via the urban middle classes and artisans in town and country.

In addition to this, and as a further complication, we must admit that it is a difficult thing to agree on what precisely constitutes literacy. Is it a reading age of twelve or above, does it require that you can write well (if so, many of our statistical ‘literates’ are not literate) and if needed, compose in prose? Are we interested in adolescent literacy or adult literacy? Does bilingualism skew our statistics, and can we easily separate out orality from literacy? If most work on literacy has tended to depend on state statistics harvested for internal bureaucratic consumption, how seriously should we take them, and how close can they take us to literacy as a component of a lived life, or as something which cannot be neatly captured by decennial survey?

There is, of course, a link between schooling and literacy in Ireland as elsewhere, but not quite the causal link one might expect. Mass schooling in Europe came at a point when most populations were already mostly literate, in the 1880s and 1890s. What separates the Irish experience and makes it somewhat unique is that mass schooling had been available some fifty years previously, right in the middle of this hundred-year revolution in reading.

Summary

An Occluded Past

In 1820 the first history of the town of Galway was published in Dublin. Its author, James Hardiman, lawyer, archivist, antiquarian and pioneering folklorist, saw it as a work of revelation, demonstrating the rich and heretofore hidden antiquity of ‘the capital of Connaught’, an urban world brought low over the previous two centuries by penal laws and mercantilist legislation, which now in a more enlightened age was entering a renaissance. Hardiman noted the extraordinary absence of urban history-writing in Ireland compared with Britain, where ‘almost every village and hamlet … can boast of its history’. Whatever the truth about that, he was correct in noting the absence of Irish work. Yet within a few years, his Galway history shared the shelf with Warburton, Whitelaw and Walsh's Dublin (1818), and with seven other Irish urban histories. These were substantial antiquarian and topographical works, but unlike the contemporaneous county statistical surveys sponsored by the Dublin Society, they were not in any way co-ordinated, and their authors were drawn from across the religious spectrum. None was unduly partisan, local pride of place it seems masking the divisive passions of the age.

The irony is that this moment of optimistic self-reflection in Irish urban history marked not so much a renaissance but rather the end of a long period of urban regeneration. In the case of the largest Irish cities, Dublin and Cork, this process had commenced in the seventeenth century, concurrent with the elaboration of English mercantilist legislation, but in the case of other port cities, county towns and regional centres, urban growth became the prevailing national trend from approximately the middle years of the eighteenth century, when of course formal religious discrimination was still in full force. Hardiman was right to talk of the eclipse of early modern Galway, but wrong to characterise it in primarily political terms. And now in the 1820s, with Anglo-Irish free trade and currency union being fully implemented and with Catholic emancipation on the cusp of achievement, Hardiman's optimism was to prove misplaced: the tide would recede once again for Galway and indeed for most of the other larger Irish towns.

Summary

Introduction

The Protestants of Ireland are a complex community, made so by social, denominational, political, economic and geographical factors. Since the early seventeenth century, there have been tensions between, on the one hand, Church of Ireland Protestants in the south, the self-styled natural leaders of Ireland with their ties to the land and the state, and, on the other, Presbyterian-dominated Ulster with its tenant farmers, industrial character and often cantankerous disposition. Of course, this simplistic dichotomy obscures social and economic divisions within both communities and the numerically small but dynamic subculture of Protestant churches and sects that have contributed much to the development of the island. Given its often bewildering variety, historians have struggled to describe the complexity of this group.

Confessional State, Enlightenment and Rebellion, 1740–1800

Ireland in the 1740s, according to S. J. Connolly, was an ancien régime society in which religious inequalities were inseparable from social hierarchy and landownership. The dominance of the members of the established episcopal Church of Ireland was predicated on the rights of landed property, not the rights of numbers. The religious allegiance of the Irish population had been determined in the previous century by population movements rather than conversion. Three-quarters to four-fifths of the population were Catholic and though various Protestants were at certain times compelled to make common cause, Irish religious divisions were not simply binary – tensions between Protestants were as important and contributed to the remarkable events of 1798 when Presbyterian rebels in Ulster joined with Catholic insurgents in the south to overthrow in part the political, social and economic ascendancy of episcopal Protestants. The confessional divisions expressed during the Williamite wars had largely subsided by the 1740s. The Age of Reason had cooled somewhat the religious temperature of the previous century, though it was the ‘good behaviour’ of Irish Catholics during the Jacobite risings of 1715 and 1745 that is perhaps more important. The penal laws played their part, but those against Catholic religious practice quickly entered abeyance whereas those concerned with landownership were rigorously enforced.

Summary

Introduction

St Patrick's Day parades have so often been a barometer of Irish identity, one day which reflects the shifting meanings of Irishness across the globe. The New York parade in 2015 was no different. Indeed, the controversial appearance in the parade, for the first time, of an LGBTQ organisation marked the culmination of decades of debate about how Irishness is (and should) be represented through the St Patrick's Day celebration. The Out@NBCUniversal group became the first gay participants officially sanctioned by the parade organisers. Representing the event's television broadcaster, the hundred or so employees of NBC who marched in 2015 were the first LGBTQ representatives to join the parade since the organising committee, led largely by the Ancient Order of Hibernians (AOH), decided to ban the Irish Lesbian and Gay Organisation (ILGO) from marching in 1991. That year, the ILGO did manage to march, but under the auspices of Division 7 of the Manhattan AOH. In protest against the decision to ban the ILGO from the main parade, Mayor David Dinkins walked with the ILGO and was pelted with beer cans by a crowd whose sympathies lay emphatically with the parade organisers. Despite being the only LGBTQ group allowed to march in 2015, the appearance of Out@NBCUniversal was significant, then, in marking a shift towards the greater acceptance of homosexuality in the Irish diaspora. More importantly, the debate about LGBTQ representation at the NYC parade reveals the great diversity of Irish identities throughout the world. While the New York parade was dominated during the 1990s and 2000s by a socially conservative (and explicitly Catholic) vision of Irishness, others reflected a greater plurality. In New York itself, since 2000 the ‘St Pat's for All’ parade in Queens has welcomed ‘all to celebrate Irish heritage and culture regardless of race, gender, creed or sexual orientation’. In Ireland, Fintan O'Toole has led criticism of the New York parade's exclusion of the ILGO and his spat in the Irish Times in March 1998 with historian Marion Casey reflects what Mary Hickman has termed ‘the heterogeneous formation’ of the Irish diaspora.

Summary

Introduction

The origins of historical research into childhood are usually traced to the publication of Philippe Ariès's 1960 study, translated into English as Centuries of childhood. Here, Ariès argued that while there have always been children, the concept of ‘childhood’ – the recognition, celebration and, frequently, idealisation of an intermediate stage of life between infancy and adulthood – only developed in the seventeenth century and then primarily among the wealthier middle classes. Later scholars have dismissed Ariès's portrayal of the Middle Ages as a period in which parents had a largely unemotional relationship with their children. However, there has been a general consensus that by the middle of the eighteenth century, certainly in elite families, the child was increasingly being recognised as an individual with needs which differed from those of adults. This chapter, therefore, charts a period of enormous change beginning with the ‘discovery of childhood’ and ending with the insertion of ‘the rights of the child’ into the Irish constitution in 2012.

Ariès inspired the development of a new field of scholarship, employing age – like gender, race or class – as a tool of historical enquiry. Methodologically, this poses challenges for historians as even within a limited region and timeframe, the definition and experience of ‘childhood’ is not universal. Furthermore, children are less likely than adults to have created records that have been preserved and, where they are extant, these sources may elude analysis by the modern adult. Historians are usually dependent on sources written or recorded by adults and, in consequence, Harry Hendrick has asked ‘can the history of children/childhood ever be more than that of what adults have done to children and how they conceptualised childhood?’ This question is not merely rhetorical. Internationally, the historiography of childhood has evolved from concentration on the changing ways in which adults – whether parents, philosophers, philanthropists or politicians – represented and thought about children, to studies of the increasing intervention by states into the lives of poor, ‘criminal’, illegitimate and other vulnerable children, to attempts through the use of such sources as oral histories, memoirs, folklore collections and children's literature to discover the authentic voices, and the agency, of children in the past.

Summary

Introduction

Ireland's diaspora over the past two hundred years or so has several distinctive features, including the changing destinations for this migrant stream and its earlier incarnations. Continental Europe and North America loomed large as destinations until 1800, while North America, Britain and Australasia proved attractive in the nineteenth century, with Britain becoming the destination of choice for many decades after 1930. The outflow to Australia and New Zealand was always smaller by comparison with mobility to Britain and North America, but still considerable. Between 1825 and 1935, for instance, almost 400,000 Irish moved to Australasia (most to Australia), though not all remained. Before turning to consider some key themes relating to the social aspects of this movement in a comparative context, a broad summary of the differing demographic issues and settlement patterns in both destinations is required.

Demographic Overview

Compared with migration to North America, the timing and scale of the Irish outflow to the antipodes differed substantially. Whereas the Irish moved across the Atlantic from the seventeenth century, the earliest arrivals into Australia took place between 1788 and 1868 with convict transportation. Around 40,000 were shipped direct from Ireland to Australia and formed about 30 per cent of the entire convict flow, which approximated to their proportion of the population in Britain and Ireland. Free migrants journeyed to the new colonies at the same time, usually as wives and children of convicts. As the century progressed, their numbers increased as a result of assisted migration so that between 1840 and 1914 around a third of a million Irish moved to Australia. Census figures indicate, however, that Australia received only about 1 in 12 of the total outflow from Ireland during the period. In 1891, for instance, the Irish population of Australia was 227,000 while it was 2 million in the USA. Australia, then, was not a major destination for the Irish. But as David Fitzpatrick has aptly put it, ‘If Australia was a minor destination for the Irish, Ireland was a major source for the Australians.’ This is evident from census figures for Australia in which the Irish-born were second only to those from England for much of the nineteenth century.

Summary

Introduction

Most people associate Ireland's migration history with emigration but the country has an infrequently referenced but rich immigration history. For example, approximately 100,000 English-, Scottish- and Welsh-born people lived on the island following partition – 50,000 in the Free State and 50,000 in Northern Ireland. Around the same time, the island contained significant pockets of Litvak Jews, especially in Dublin, and smaller groups of Italians, French and German immigrants. Improvements in the Irish economy and the country's entry in to the European Economic Community (EEC) encouraged more west European immigrants to move to Ireland, with the amount of people born in the seven other EEC countries, excluding Ireland and the UK, tripling between 1971 and 1991. None the less, in comparison with other west European countries, Ireland remained a country remarkably untouched by post-war immigration.

Until the 1990s, immigration to Ireland consisted mostly of Irish emigrants returning home and a small number of Britons moving across the Irish Sea – often for love. With no pressing need for foreign workers owing to a largely stagnant economy, Ireland never attracted significant numbers of immigrants after independence. Since 1991, however, the country has undergone an enormous change as it came to contain a larger proportion of immigrants than many western European states that had experienced extensive immigration for fifty years or more. By 2011, 17 per cent of the population had been born abroad while 12 per cent of the population were citizens of other countries. Fewer than 55,000 people resident in the state in 1991 were born outside Ireland or the UK; by 2011 this had risen to more than 460,000. Other western European states, such as Italy, Portugal and Greece, had experienced similar transitions from countries of emigration to countries of immigration but not on the same scale as Ireland. Spain, which experienced a comparable construction boom – and subsequent bust – harboured the most similarities with Ireland, but many of its immigrants came from the country's former colonies in Latin America. The vast majority of Ireland's immigrant population came from other EU countries. This further distinguished Ireland from its EU counterparts, since most European states’ immigrants came from outside the EU.

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Chapter 20 - Human Genetics and the Law

Summary

Chapter 15 - Withdrawal and Withholding of Medical Treatment

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Chapter 8 - Regulating Patient Safety and Redress

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List of figures and tables

PART I - FRAMEWORKS

Chapter 19 - Biobanks

Summary

Chapter 9 - Consent to Medical Treatment

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B - Law at the Beginning and the End of Life

Chapter 24 - Public Health Law

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D - Law and Populations

Index

Frontmatter

Index

15 - Literacy and Education

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7 - Town and City

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6 - Protestants

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32 - Cultural Transmission, Irish Associational Culture and the ‘Marching’ Tradition

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20 - Childhood since 1740

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28 - The Irish in Australia and New Zealand

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33 - Migration and Integration since 1991

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