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Adolescent psychopathic traits and adverse environments: Associations with socially adaptive outcomes
- Kristopher J. Brazil, Ann H. Farrell, Abby Boer, Anthony A. Volk
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- Journal:
- Development and Psychopathology , First View
- Published online by Cambridge University Press:
- 12 February 2024, pp. 1-13
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Researchers have suggested that psychopathic traits among adults may be, at least in part, an adaptive and/or a learned response for securing socially adaptive outcomes in adverse environments, but there is a lack of developmental evidence supporting this hypothesis among adolescents. Therefore, we examined the indirect links from self-perceived adverse environments (parental neglect, socioeconomic status, school competition, neighborhood violence) to evolutionarily relevant social outcomes (social power, dating behavior) through psychopathic traits. A community sample of 396 adolescents completed measures for the study (Mage = 14.64, SD = 1.52). As predicted, there were significant indirect effects from higher levels of parental neglect, school competition, and neighborhood violence to both forms of socially adaptive outcomes through psychopathic traits, but unexpectedly, there were no indirect effects with socioeconomic status. There were also direct effects between environment and socially adaptive outcomes. Results support the hypothesis that psychopathic traits may be, in part, an adaptive and/or learned response to cues from adverse social environments as a means to acquire evolutionarily relevant social outcomes. Interventions could be designed to target the adverse social issues that might be facilitating the development of psychopathy and should be sensitive to the social outcomes adolescents may acquire from these traits.
Utilizing technology to expand home monitoring to high-risk infants with CHD
- Dana Hartman, Eric Ebenroth, Anne Farrell
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- Journal:
- Cardiology in the Young / Volume 33 / Issue 7 / July 2023
- Published online by Cambridge University Press:
- 15 July 2022, pp. 1124-1128
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Infants born with single ventricle physiology that require an aorto-pulmonary shunt are at high risk for sudden cardiac death, particularly during the interstage period between the first-stage palliation and the second-stage palliation. Home monitoring programs have decreased interstage mortality in the hypoplastic left heart syndrome population prompting programs to expand the home monitoring program to other high-risk populations. At our mid-sized program, we implemented the Locus Health home monitoring platform first in the hypoplastic left heart syndrome population, then expanding to the single ventricle shunt population. Interstage mortality for the hypoplastic left heart syndrome population after initiation of the home monitoring program went from 18% prior to 2009 to 7% as of the end of 2020 (n = 99), with 2.8% mortality from 2013 to 2020 and 0% mortality since initiation of the Locus program in 2017. Caregiver surveys done prior to discharge and then 3 weeks later were used to document caregiver experience using the digital home monitoring program. Caregivers reported overall positive experience with the digital application, with 91.8% stating that they felt confident taking care of their baby at home. Transitioning the home monitoring program from a traditional binder to an iPad with the Locus Health application allowed us to expand the program, utilize the electronic medical record, bill for the service, and demonstrate positive experiences for caregivers. Overall engagement and adherence with the program by caregivers were 50.94 and 45.45%, with a total of 112 patient episodes. Reimbursement from private insurance providers was 22% of the billed amount for 2020.
Indirect aggression, anxiety, and empathy: Disaggregating between and within person longitudinal associations during childhood and adolescence
- Ann H. Farrell, Tracy Vaillancourt
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- Journal:
- Development and Psychopathology / Volume 35 / Issue 1 / February 2023
- Published online by Cambridge University Press:
- 23 December 2021, pp. 228-240
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Although indirectly aggressive behavior and anxiety symptoms can co-occur, it is unclear whether anxiety is an antecedent or outcome of indirect aggression at the individual level and whether other personality traits can contribute to these longitudinal associations. Therefore, the between- and within-person associations among indirect aggression, anxiety symptoms, and empathic concern were examined across adolescence from ages 11 to 16 in a cohort of individuals followed annually (N = 700; 52.9% girls; 76.0% White) controlling for direct aggression and demographic variables. Results of autoregressive latent trajectory models with structured residuals supported an acting out model at the within-person level. Specifically, anxiety symptoms positively predicted indirect aggression and indirect aggression negatively predicted empathic concern at each adjacent time point. These findings suggest that methods of reducing worries about the self and increasing healthy self-confidence could prevent indirect aggression and help build concern and compassion toward others.
Food environment research is needed to improve nutrition and well-being in Asia and the Pacific
- Penny Farrell, Cut Novianti Rachmi, Georgina Mulcahy, Matthias Helble, Anne Marie Thow
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- Public Health Nutrition / Volume 24 / Issue 14 / October 2021
- Published online by Cambridge University Press:
- 28 May 2021, pp. 4706-4710
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Reproductive health conversations in adolescents with CHD
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- Shannon M. Lyon, Amy J. Katz, Anne G. Farrell, Marcia L. Shew
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- Journal:
- Cardiology in the Young / Volume 31 / Issue 8 / August 2021
- Published online by Cambridge University Press:
- 15 February 2021, pp. 1263-1268
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Background:
Reproductive issues as related to CHD must be discussed in the clinic and at home. Providers can ensure that correct information is imparted to the adolescent and encourage mothers to provide support and guidance to the adolescent. The level to which these conversations occur is unknown.
Methods:A survey distributed to female adolescent/mother dyads assessed self-reported conversations with the healthcare provider and between each other about reproductive health topics. A clinician survey was completed to assess CHD diagnosis, risk of hormonal contraception, and pregnancy risk.
Results:Among 91 dyads, 33.0% of adolescents and 42.9% of mothers reported discussing recurrence risk of CHD with the provider. In regard to the cardiac lesion affecting a baby, 30.7% of adolescents and 28.7% of mothers reported discussing this with a provider. Significantly less adolescents and mothers reported discussing the risks of hormonal contraception and pregnancy with a provider. In assessing conversations between adolescents and mothers, only 44.2% of adolescents and 52.3% of mothers reported discussing with each other the safety of using birth control and 46.5% of adolescents and 64.0% of mothers reported discussing the safety of pregnancy.
Conclusions:Adolescents with CHD and their mothers report low rates of reproductive health-related conversations with the healthcare provider, and mothers report low rates of having these conversations with their daughters. These topics should be discussed at each appointment with the cardiologist and must be encouraged to continue at home.
Salivary amylase gene copy number and its association with fasting and postprandial glucose response
- Mary Farrell, Emily Sonestedt, Anne Raben, Juscelino Tovar, Stina Ramne, Phébée Gouinguenet
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- Journal:
- Proceedings of the Nutrition Society / Volume 79 / Issue OCE2 / 2020
- Published online by Cambridge University Press:
- 10 June 2020, E137
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Introduction
When compared to other primates, humans elicit a large variation in the copy number for the salivary amylase gene, AMY1. This variation can range from 2 to 17 copies. The AMY1 gene is responsible for coding for salivary amylase, an enzyme needed to catalyze the hydrolysis of starch molecules into smaller sugars. AMY1 copy number correlates with the amount and activity of salivary amylase. Few studies have investigated the effect of amylase copy number on fasting and postprandial glucose levels. The aim was first to investigate the association between AMY1 copy numbers and fasting glucose in an observational study, and secondly to investigate the difference in postprandial effect of high-starch meals in individuals with either high or low AMY1 copy numbers.
Materials and methodsFor the observational study, we used data from 436 participants from the Malmö Offspring Study (MOS) cohort whom have been genotyped for AMY1. For the meal study (conducted during May 2019), we used genotype-based-recall to recruit 24 participants from the observational study of the MOS cohort: 12 with low AMY1 copy number (from the lowest 20%) and 12 with high AMY1 copy numbers (from the highest 20%). Each subject will be served a breakfast meal of white wheat bread on two separate test days: one containing 40 g and the other containing 80 g of carbohydrates (mainly starch). Blood samples will then be taken at various time points to investigate postprandial glucose and insulin responses.
ResultsWhen using linear regression analyses adjusting for age and sex, no significant association between AMY1 copy number and fasting glucose was observed (p = 0.23). However, there was a difference (p = 0.05) in fasting glucose levels between the lowest (2–4 copy numbers: 5.31 mmol/L; 95% CI: 5.13–5.50) and highest (10–16 copy numbers: 5.57 mmol/L; 95% CI: 5.39–5.75) copy number groups. The results for the meal study will be obtained in June 2019 and be presented at the conference.
DiscussionOur findings of higher fasting glucose among the group with more than 10 AMY1 copy numbers is the first study to find this and needs to be replicated in other populations.
Risk stratification of patients with hypoplastic left heart syndrome and intact atrial septum using fetal MRI and echocardiography
- Ryan M. Serrano, Sabena Hussain, Brandon Brown, Eric S. Ebenroth, Anne Farrell
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- Journal:
- Cardiology in the Young / Volume 30 / Issue 6 / June 2020
- Published online by Cambridge University Press:
- 14 May 2020, pp. 790-798
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Despite prenatal diagnosis, prenatal intervention, and immediate postnatal intervention, patients with hypoplastic left heart syndrome and intact or highly restrictive atrial septum have the highest risk for mortality. Charts for all infants diagnosed with hypoplastic left heart syndrome from 2009 to 2017 were retrospectively reviewed and compared, including pulmonary vein Doppler patterns on fetal echocardiogram and evidence of pulmonary lymphangiectasia on fetal MRI. Of the 81 newborns with hypoplastic left heart syndrome, we defined two groups. Group 1 patients had an adequate atrial septal communication (n = 69), while Group 2 met criteria for intact/restrictive septum (n = 12). No patient in Group 1 had a type C pulmonary vein Doppler pattern, while no patient in Group 2 had a type A pulmonary vein Doppler pattern. The two patients with pulmonary lymphangiectasia had type C pulmonary vein Doppler pattern and an intact atrial septum and did not survive. Survival to discharge for Group 1 was 83% compared to 58% for Group 2 (p = 0.116). Survival to stage 2 palliation was 71% for Group 1 compared to 50% for Group 2 (p = 0.186). Only 4 of the initial 12 patients from Group 2 are alive, which is an overall survival of 33%. Our experience supports previous evidence that fetal echocardiography can identify those patients with the greatest likelihood for postnatal intervention as well as those at highest risk for mortality. Fetal MRI is a novel imaging modality that may help providers separate patients at highest risk for mortality, regardless of pulmonary vein Doppler pattern.
Table of statutes
- Anne-Maree Farrell, La Trobe University, Victoria, John Devereux, University of Queensland, Isabel Karpin, University of Technology, Sydney, Penelope Weller
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- Health Law
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- 06 August 2018
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- 01 May 2017, pp xxxi-xliv
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Chapter 12 - Confidentiality, Privacy and Access to Information
- from A - Patients, Doctors and Healthcare
- Anne-Maree Farrell, La Trobe University, Victoria, John Devereux, University of Queensland, Isabel Karpin, University of Technology, Sydney, Penelope Weller
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- Health Law
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- 06 August 2018
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- 01 May 2017, pp 149-160
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Summary
Introduction
Health information is among the most sensitive information. Details of illness, disease and treatment are highly personal. Historically, codes of ethics have carefully regulated the use to which such information can be put. While ethics continues to enjoin healthcare professionals from misusing private information, more modern formulations attempt to balance the confidentiality of health information with a lawful right of access by patients, and to ensure the legitimate use of information by doctors, institutions and researchers. This chapter first explores the ethical and legal obligation of confidence and the exceptions to it. In the second part, it examines ‘the flip side’: access to information. In the final part of the chapter, the limitations on a doctor's right to collect and disseminate information are explored.
The rationale for maintaining confidentiality
Skene has identified three rationales for maintaining confidentiality:
• Medical: from a medical point of view, maintaining a patient's confidentiality benefits a patient's treatment. Knowing that a patient can speak freely, unworried about the thought of what use might be made of the information means that a patient can divulge information which might be useful to making an accurate diagnosis.
• Ethical: from an ethical point of view, maintaining a patient's confidential information respects a patient's autonomy and right to self-determination, as well as the dignity of each person.
• Public policy: it is in the public interest that all people in society be given optimum treatment. This can best be achieved by ensuring accurate diagnosis, which, in turn, is dependent upon free and frank disclosure of information. This is most likely to happen when the patient is assured that information ‘will go no further’.
As Raanan Gillon notes:
In order to do a good job for their patients, doctors often need to have information of a sort that people generally regard as private, even secret … Some of the information is embarrassing to discuss, and some may be positively harmful to the patient or others if it is divulged. Doctors routinely ask a series of questions about bodily functions that people would not dream of discussing with anyone else … Such intrusive medical inquiries are not based on prurience or mere inquisitiveness but on the pursuit of information that may assist the doctor in treating and helping the patient.
Chapter 2 - Philosophical Bioethics and Health Law
- from A - Theories, Perspectives and Ethics in Health
- Anne-Maree Farrell, La Trobe University, Victoria, John Devereux, University of Queensland, Isabel Karpin, University of Technology, Sydney, Penelope Weller
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- Health Law
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- 06 August 2018
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- 01 May 2017, pp 12-23
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Summary
Introduction
Discussions of ethical issues in healthcare and reproduction often move quickly from judgments about the morality of a certain practice to judgments about how that practice ought to be regulated. However, it is important to distinguish between these two levels of analysis. Someone might believe, for example, that abortion is morally wrong in certain circumstances. However, they might not believe that abortion should be prohibited by law in those circumstances. One may hold that there is a variety of reasonable views about the morality of abortion, but that the law should not be enforcing one such view. So, being justified in judging a certain practice as immoral or unethical might not provide sufficient reason to hold that such a practice should be deemed unlawful.
Ethical theories and concepts can therefore be used to evaluate individual health decisions and laws, and also to justify changes to healthcare practices and law reforms in this area. Two distinct levels of ethical frameworks are commonly appealed to in philosophical bioethics. They can serve as a basis for judgments about regulating a practice, as well as for judgments about the morality of the practice itself. There are broad-based ethical theories and approaches, such as Kantian ethics, Utilitarianism, Virtue ethics, and Feminist ethics, and there are also more practical ethical frameworks specifically addressing healthcare practice, such as the well-known ‘principlist’ framework developed by Beauchamp and Childress. The key elements of this framework are the concepts of autonomy, beneficence (including non-maleficence, or doing no harm), and justice. This chapter outlines both these broader and more specific ethical frameworks, and briefly explains the constituent concepts involved in each of them.
Rights-based approaches
While a range of rights-based ethical theories have been applied to healthcare practices, the most influential contemporary rights-based theories have been developed from an approach devised by the 18th-century German philosopher, Immanuel Kant. Kant argued that it is through using reason to govern actions that human beings become truly self-determining and therefore free. On this approach, only reason can reveal to us how we ought to act, and any human being with a capacity for rationality can recognise what is right and wrong, and can perform morally right actions.
Chapter 5 - Health and Human Rights Law
- from A - Theories, Perspectives and Ethics in Health
- Anne-Maree Farrell, La Trobe University, Victoria, John Devereux, University of Queensland, Isabel Karpin, University of Technology, Sydney, Penelope Weller
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- Health Law
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- 06 August 2018
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- 01 May 2017, pp 48-60
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Summary
Introduction
Improving the health of human populations is one of the core objectives of modern societies. In recent decades, this objective has been pursued through human rights frameworks. In the Australian context, this has been facilitated by the growing influence of human rights norms in legal discourse in a range of health-related areas, underpinned by Australia's ratification of international human rights conventions. The influence of human rights in national law is interwoven with a range of topics examined in this book, including mental health, disability, end of life decision-making, organ and tissue donation, human genetics, indigenous health and public health. An informed and critical understanding of the role of human rights in advancing the national and global health agenda, in particular its role in addressing health inequities and its interface with health security, is therefore vital.
The scope of any examination of the relationship between health and human rights law is potentially very wide. Apart from the right to health, which is clearly of central concern, such an examination could also include civil and political rights, including the rights to life, to be free from torture, to respect for private life and to freedom of expression. Adopting such an approach has been described by academic commentators, such as Murphy, as the ‘right-to-health plus’. For reasons of space, however, a decision has been taken to focus in this chapter on the human right to health, given its status as one of the foundation principles in international human rights law. The right to health is now at the centre of international political debate and social policy, spurred by recognition of the interdependence of all human rights and the social determinants of health.
In developed nations such as Australia, it is often assumed that good standards of living and public access to healthcare fulfil national and international obligations with respect to the right to health. This chapter argues that the right to health demands a more robust engagement with the social determinants of health and applicable human rights standards. National law and policy debates about health, healthcare and the social determinants of health are rarely posed in terms of the human right to health, despite the fact that Australia has ratified all the major international human rights conventions.
Chapter 14 - Regulating Emerging Reproductive Technologies
- from B - Law at the Beginning and the End of Life
- Anne-Maree Farrell, La Trobe University, Victoria, John Devereux, University of Queensland, Isabel Karpin, University of Technology, Sydney, Penelope Weller
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- Health Law
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- 06 August 2018
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- 01 May 2017, pp 180-189
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Summary
Introduction
In this chapter, the future of reproductive technology and its regulation is examined. When dealing with emerging technologies, regulators have to determine whether it is appropriate to regulate prospectively or reactively, taking account of a range of ethical, social and legal issues that may be raised by such developments. While there have been some significant legislative changes in Australia to address speculative technologies, there is generally a legal lag when it comes to technologies that are no longer speculative but are nevertheless very new. In addition, it may be the case that such technologies are approved for use in other jurisdictions, but not in Australia.
This chapter will examine a range of emerging technologies which are proposed to be or are currently being used as part of Assisted Reproductive Technology (ART) treatment. There is much more that could be included within the remit of this topic, but for reasons of space there is a need to narrow the focus to some of the more high-profile and contested emerging technologies in the area. Specifically, the technologies that are examined in this chapter are: non-invasive prenatal tests, otherwise known as NIPT; technologies being employed to address mitochrondrial disease; new vitrification techniques to preserve oocytes; the creation of in vitro-derived artificial gametes and induced pluripotent stem cells (iPS) for reproduction.
Non Invasive Prenatal Testing (NIPT)
NIPT is already available in Australia, but it is not yet routinely used and is not covered by Medicare. It involves a simple blood test that can be performed on a pregnant woman from nine weeks, and analyses cell-free fetal nucleic acids found in low levels in maternal blood. While scientists claim to have successfully scanned the entire DNA of a fetus from the mother's blood, the test is not currently used for that purpose in Australia. Instead, it is used to detect fetal chromosomal abnormalities, such as Trisomy 13 (Patau syndrome), Trisomy 18 (Edward syndrome), Trisomy 21 (Down syndrome), and sex chromosome abnormalities. NIPT is not currently viewed as a diagnostic test, although many would argue that the accuracy rate brings it close to that standard. In Australia, when NIPT testing produces a positive result, follow-up diagnostic tests such as Chorionic Villus Sampling (CVS) and Amniocentesis may be recommended to confirm a diagnosis.
Preface
- Anne-Maree Farrell, La Trobe University, Victoria, John Devereux, University of Queensland, Isabel Karpin, University of Technology, Sydney, Penelope Weller
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- Health Law
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- 06 August 2018
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- 01 May 2017, pp xxi-xxii
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Summary
This book explores health in its socio-legal context in Australia and beyond. It critically examines key frameworks and contexts which underpin the relationship between law and health. This is done with a view to better conceptualising this relationship in what is a burgeoning area of national and international academic study and policy interest. As such, it offers a new way forward within legal scholarship in the field, which will be of interest to a range of audiences, including academics, policy-makers, health professionals and students. As we developed this approach, we have been greatly assisted by the insightful feedback we have received on each of the chapters from independent peer reviewers. We would like to thank them for their time and contribution. The policy and law described in this book is current as at 1 January 2017.
Anne-Maree Farrell would like to acknowledge the support of the Australian Research Council (ARC) in relation to Chapters 17, 18 and 19, which draw on research undertaken while in receipt of the ARC Future Fellowship, Regulating Human Body Parts: Principles Institutions and Politics (FT130101768). Isabel Karpin would like to acknowledge the support of the ARC in relation to Chapters 4 and 20 (together with Karen O'Connell) and 22, which draw in part on research undertaken for the ARC Discovery Grant, The Legal Regulation of Behaviour as a Disability (DP150102935). In relation to Chapter 13, Isabel Karpin would also like to acknowledge such support in relation to the ARC Discovery Grant, Regulating Relations: Forming Families Inside and Outside Law's Reach (DP150101057).
The authors would also like to acknowledge the ongoing support provided by Cambridge University Press throughout this project, in particular by Lucy Russell, Senior Academic Commissioning Editor. We very much appreciate the contribution of additional individual chapters by our academic colleagues Stephen Gray, Kate Mulvany, Justin Oakley, Karen O'Connell and Gabrielle Wolf. We are also very grateful for the research and editorial assistance provided by Naomi Burstyner, as well as by Valerie Gutenev-Hale, Sarah McHutchison, Kate Mulvany and Marnie Manning. Finally, we would also like to thank our families for their support and patience throughout the process of writing this book. As always, it is much appreciated.
Contents
- Anne-Maree Farrell, La Trobe University, Victoria, John Devereux, University of Queensland, Isabel Karpin, University of Technology, Sydney, Penelope Weller
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- Health Law
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- 06 August 2018
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- 01 May 2017, pp vii-xviii
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Chapter 3 - Socio-Legal Perspectives on Patient-Doctor Relations
- from A - Theories, Perspectives and Ethics in Health
- Anne-Maree Farrell, La Trobe University, Victoria, John Devereux, University of Queensland, Isabel Karpin, University of Technology, Sydney, Penelope Weller
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- Health Law
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- 06 August 2018
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- 01 May 2017, pp 24-33
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Summary
From the 1970s onwards, growing interest in the critical examination of the relationship between law and medicine led to the emergence of a new area of academic study known as medical law. While the initial catalyst for such interest was the exponential growth in medical negligence litigation in a number of common law jurisdictions, including Australia, it was also influenced by an appreciation of law's potential role in promoting an ethically principled approach to the doctor-patient relationship. Law's role in such a relationship, underpinned by (philosophical) bioethical critique, remains a core aspect of study and scholarship in the field of medical law, as well as within the expanding field of health law.
While the relationship between bioethics and the law has become an established approach to understanding and critiquing the moral dilemmas and challenges that arise in the doctor-patient relationship, what it lacks is a more nuanced and contextual account of other important social dynamics that influence such a relationship. In turn, this may impact upon what law does and does not take into account in determining the acceptable parameters of such relationships. Law's role in this regard includes, for example, the regulation of the health system, the health professions and patient safety (Chapters 7–9); legislation which may either directly or indirectly impact upon such relations (Chapters 4 and 10), and redress mechanisms for harm caused to patients in healthcare settings (Chapters 8, 11 and 12).
Through a number of illustrative examples, the aim of this chapter is to highlight the importance of a contextual analysis of the patient in the study of health law, which is embedded in their day-to-day experiences with their treating doctors (as well as other health professionals). The objective in doing so is to facilitate a more critical reflection of the limits of the traditional twinning of ethical and legal analysis in seeking to understand how patients interact with their treating doctors, and to encourage a broader engagement in health law with both theoretical and empirical research in the social sciences.
The first part of the chapter presents a brief consideration of the social context in which patients access and receive healthcare, as well as law's role in that context. The social determinants impacting health are important in this context and they are considered in much more detail in Chapter 4.
Chapter 10 - Substituted Decision-Making
- from A - Patients, Doctors and Healthcare
- Anne-Maree Farrell, La Trobe University, Victoria, John Devereux, University of Queensland, Isabel Karpin, University of Technology, Sydney, Penelope Weller
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- Health Law
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- 06 August 2018
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- 01 May 2017, pp 127-137
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Summary
Introduction
The term ‘substituted decision-making’ refers to a range of processes that create decision-making mechanisms for people who are unable to make decisions for themselves. Traditionally, substituted decision-making involves the appointment of a person to make decisions on behalf of another, usually on a ‘best interests’ basis. Such arrangements are thought necessary whenever an individual lacks the mental capacity to make decisions for themselves. The concept of substituted decision-making has expanded to include self-appointed substitutes, advance directives and new forms of collaborative or supported decision-making.
Substituted decision-making mechanisms are used for a range of personal decisions, including medical, financial or lifestyle matters. Understanding who is authorised to make a particular decision, and on what basis, can be a complex area for healthcare professionals. This chapter focuses on substituted decision-making for general healthcare decisions. The first part of the chapter discusses the historical development of substituted decision-making and its place in the common law. The second part discusses substituted decision-making arrangements initiated by individuals with capacity, such as advance directives and enduring powers of attorney. The third part discusses guardianship law and provides a brief outline of such laws in Australian jurisdictions.
It is very likely that current laws on substituted decision-making will change in the near future. Because of this, the fourth part of the chapter focuses on current critiques of substituted decision-making. The modern trend in substituted decision-making is for partial, time-limited arrangements that are linked to the wishes of the person who is the subject of the decision. However, the Convention on the Rights of Persons with Disabilities (CRPD) calls for the replacement of all substituted decision-making arrangements with supported decision-making. Moreover, the obligation to afford people with disabilities ‘equal recognition before the law’ in article 12 of the CRPD requires positive protection of the legal capacity of people who are cognitively impaired.
Historical overview
Substituted decision-making existed in Roman law as early as the 5th century BC and has been invoked since that time as a method of protecting the interests of vulnerable citizens. Recognition of substituted decision-making in the common law stems from the development of the English doctrine of parens patriae in the 16th century.
Chapter 22 - Health Law and People with Disability
- from D - Law and Populations
- Anne-Maree Farrell, La Trobe University, Victoria, John Devereux, University of Queensland, Isabel Karpin, University of Technology, Sydney, Penelope Weller
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- Health Law
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- 06 August 2018
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- 01 May 2017, pp 293-304
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Summary
Introduction
The relationship between health law and disability is not straightforward. The traditional medical model of disability, that views disability as a physical problem, intrinsic to the individual, has been the subject of sustained criticism by disability scholars and others working in the field. Instead, in recent regulatory and policy instruments, the social model of disability has replaced the medical model. The social model proposes that disability is the consequence of structural and systemic breakdowns that fail to create inclusive and responsive environments to non-normative bodies. This model arguably reached a highpoint when, together with a human rights model, it was used in the development of the Convention on the Rights of Persons with Disabilities (CRPD).
In contexts where advocacy for the rights of people living with disability has been effective, the social model has demanded changes that promote broader accessibility and challenge assumptions about capabilities. Disability advocates have argued that rather than, or in addition to, offering a medical or health fix, what is needed is a reimagining of the social and a reconstruction of the environment. In recent disability studies debates, the key assertion is that people are both embodied and constituted within and by particular social, political and medical contexts.
This chapter, then, explores the way disability is both constructed and managed through legal, as well as medical and social, discourses. The institution of law forms part of the social context that constitutes the embodied subject and contributes to the construction of notions of ability and disability. The law thus has an important role to play in addressing and redressing differential and discriminatory treatment, and in the administrative mechanisms for managing difference in our community. In order to explore these issues, the first part of the chapter examines some of the definitions of disability used in law and social policy and the second part explores contemporary models of disability posed by legal theorists, sociologists and bioethicists. There are many important areas of concern that might have been considered in this chapter, but given the constraints of space, rather than attempt to cover all issues at a superficial level, the chapter instead provides the tools for interrogating laws dealing with people with disability in a health law context.
List of abbreviations
- Anne-Maree Farrell, La Trobe University, Victoria, John Devereux, University of Queensland, Isabel Karpin, University of Technology, Sydney, Penelope Weller
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- 01 May 2017, pp xlv-l
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Chapter 17 - Organ and Tissue Donation and Transplantation
- from C - Law and the Human Body
- Anne-Maree Farrell, La Trobe University, Victoria, John Devereux, University of Queensland, Isabel Karpin, University of Technology, Sydney, Penelope Weller
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- Health Law
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- 06 August 2018
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- 01 May 2017, pp 216-244
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Summary
Introduction
In the 21st century, advances in scientific research, biotechnology and clinical care have greatly expanded the potential for organ and tissue donation and transplantation. Although the promise of xenotransplantation has not yet been realised, there have been recent successes with womb and face transplant surgery. Tissue which can be used for transplantation purposes is already being created through the use of 3D bioprinting. There is also hope that advances in both stem cell and 3D printing technologies will lead, in the not too distant future, to the creation of (solid) organs which are suitable for transplantation.
Developments in machine (or ex-vivo) perfusion of organs also offer the potential for repair and regeneration of organs, enabling more organs to be available for transplant. Notwithstanding the promise of such technologies, the current reality in Australia is that demand for human organs and tissue greatly exceeds supply.
Currently, there are around 1500 individuals on national organ transplant waiting lists. New medical treatments and technological advances, as well as the rise in the number of Australians with chronic medical conditions which require organ transplants, means that the gap between supply and demand looks set to increase in the future. Whether or not demand for tissue and organs can ever be met remains a contested issue. If demand cannot be met, it is argued that the key question in policy terms should be the design of just and fair allocation criteria in order to ensure ‘appropriate use of a scarce resource’. Nevertheless, much of the academic and policy literature in the field is focused on how best to increase rates of both deceased and living organ donation in circumstances which are ethically justified, legally permissible and politically acceptable.
This chapter examines key aspects of the organ and tissue donation and transplantation system in Australia. The types of human tissue considered are those donated and supplied for the purposes of transplantation, such as hearts, lungs, kidneys, livers, intestines and pancreases. Tissues that can be used include eyes, bones, tendons, ligaments, skin and heart valves. In addition, there are also ‘vascularised composite tissue allografts’, which involve transplantation of multiple tissues such as muscle, bone, nerve and skin, as a functional unit (for example, face or hand).
Frontmatter
- Anne-Maree Farrell, La Trobe University, Victoria, John Devereux, University of Queensland, Isabel Karpin, University of Technology, Sydney, Penelope Weller
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- Book:
- Health Law
- Published online:
- 06 August 2018
- Print publication:
- 01 May 2017, pp i-iv
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