Our latest entry comes from our newest member, Dr Ivanka Antova. Ivanka is a postdoctoral research fellow on a project examining health governance after Brexit. Funded by the ESRC, one of the UK’s research councils, the project is a partnership between teams at Queen’s University Belfast and the University of Sheffield. You can follow the project on Twitter @brexithealthlaw.
I am currently working on a paper examining how narratives on personal responsibility for health tie in with narratives on responsibilisation and how both could feature in post-Brexit health governance. The paper aims to present an intersection between theoretical work on responsibilisation of health and qualitative data emerging from the ‘health governance after Brexit’ project street-ethnography. I intend to bring this paper to an upcoming Critical Legal Conference, an annual event to which I have a strong connection. To develop my knowledge and ideas, I am reading the work of Nikolas Rose and others on issues including personalised medicine and a new paradigm for healthcare, calculating of global health, and more broadly, power beyond the state.
And because I am also in the midst of carrying out street ethnography for the health governance after Brexit project, on which I am a research fellow, I am reading literature on ethnography and fieldwork.
Finally, for further thoughts and academic development, I am reading the engaging work of Victoria Canning, in particular her focus on how the ‘hostile environment’ for refugees and asylum seekers in the UK has been constructed and why it should be resisted.
HHRU will soon have a new member, Dr Clayton O’Neill, who will be joining us and QUB School of Law from September 2019. We’ll be welcoming Clayton in a range of ways, and we’re delighted to have the following entry from him for our What We’re Reading page.
I’ve recently submitted an article for consideration on the connection between patient safety and dementia. In this article, I relied heavily on Alan Gewirth’s theories of ethical rationalism. I placed particular focus on Gewirth’s book, entitled Self-Fulfillment. This book involves consideration of the idea of the self and, for Gewirth, self-fulfilment ‘betokens a life well lived, a life that is deeply satisfying, fruitful, and worthwhile’. For anyone interested in Gewirthian theory, it’s essential to read Gewirth’s Reason and Morality and Deryck Beyleveld, ‘The Principle of Generic Consistency as the Supreme Principle of Human Rights’ (2011) 13 Human Rights Review 1–18. A comprehensive overview of this area of ethical rationalism can be found in much of Shaun Pattinson’s work including, in particular, his most recent book, Revisiting Landmark Cases in Medical Law.
I really enjoyed reading Foster, Herring and Doran’s edited book, entitled The Law and Ethics of Dementia. This book provides an excellent synthesis of the medical fundamentals of dementia, ethical and legal perspectives, as well as the social aspects of dementia. The last section of the book concerns the actual perspectives of patients and carers, describing perspectives and experiences that are, I think, both heart-breaking and incredibly resilient.
I’ve also been reading some excellent work on capacity, such as Emma Cave’s ‘Determining capacity to make medical treatment decisions: problems implementing the Mental Capacity Act 2005’ (2015) 26 Statute Law Review 86–106. Cave provides an insightful analysis of the Mental Capacity Act and she advocates for greater empowerment of patients. This concept of empowerment is also evident in other work written by Cave. This concept is, in my view, particularly interesting in the context of patients with borderline capacity.
In the context of global health, I’m currently reading Meier and Gostin’s recent book, Human Rights in Global Health: Rights-Based Governance for a Globalizing World. This book offers an extremely comprehensive picture of the relationship between global health and human rights. The authors analyse the role the World Health Organization and inter-governmental organisations, as well as the connection between global health and human rights governance.
Just in time for your summer reading list, we have a posting from Hannah van Kolfschooten who obtained her LLM in Health Law in July 2018 and is currently working as a junior researcher in International and European Health Law at the University of Amsterdam Law School.
Last year, I wrote my master’s thesis on EU and WHO coordination of national responses to public health emergencies. I specifically looked into the role of the right to informed consent in pandemic policies, and how this right is safeguarded in the context of increasing risks of pandemic disease outbreaks. To establish the implications of EU and international action regarding pandemics for individual rights, I conducted a legal case study on the 2013-2016 Ebola outbreak.
I still take great interest in the balancing of individual rights and public health at the EU and WHO level. I am currently converting my master’s thesis into a journal article and I am also researching national constitutional safeguards in the context of public health emergencies as part of a large research project on the EU constitutional order for responding to human health disasters, conducted by Dr Anniek de Ruijter. Furthermore, I am finishing an master’s thesis for my second LLM, this time in Information Law. This thesis focuses on EU fundamental rights protection in mobile health apps.
As for readings related to EU public health emergencies, the Research Handbook on EU Health Law and Policy is a must-read for a comprehensive overview of the most important aspects of and developments in EU health law and policy. I learned a lot about the EU’s policy on emergency vaccines from Marco Rizzi’s Vaccines for Pandemic and Epidemic Diseases: Towards defining the space of EU public health between security policy and a transnational market, and I was inspired by an article by Elisabeth M. Speakman, Scott Burris and Richard Coker on the need for a systematic comparison of EU Member States’ pandemic legislation. Furthermore, I have read many interesting articles on human rights implications of the response to Ebola, in particular Ebola and Human Rights: Post-9/11 public health and safety in epidemics, on how health is increasingly being militarised and framed as an issue of national security, which undermines human rights.
With regard to fundamental rights and mobile health apps, I can recommend New Technologies and EU Law for better understanding of the way EU law approaches the emergence of new technologies, with some interesting chapters on health technologies. I also took great interest in reading more about bioethics, such as Childress and Beauchamp’s classic Principles of Biomedical Ethics, but also more recent articles on the role of bioethics in our transforming, data-driven world, such as Digital health and the biopolitics of the quantified self by Btihaj Ajana and Privacy as human flourishing: Could a shift towards virtue ethics strengthen privacy protection in the age of big data? by Bart van der Sloot.
We’re pleased to present some reading suggestions from our Marie Sklodowska-Curie Fellow, Dr Patrycja Dabrowska-Kłosińska
My recent reading has been particularly wide-ranging. I have explored both The European Convention on Human Rights: A Commentary (Schabas, 2017) and Big Data, Health Law, and Bioethics (Cohen et al, 2018). For my THEMIS project, I am digging into European and US case law on lawful exemptions from mandatory vaccination laws. In order to grasp the complex issues arising from those judgments, I read an article by Mello, Studdert and, one of my favourite authors, Wendy Parmet, Shifting Vaccination Politics: The End of Personal-Belief Exemptions in California (2015), as well as Statistics on Trial (David, 2007), which explores the traps of the use of statistical evidence in judicial reasoning. I am also fascinated by a recent translation into Polish of Thorwald’s Science and Secrets of Early Medicine: Egypt, Mesopotamia, India, China, Mexico, Peru where I discovered that ancient Egyptians suffered from tuberculosis!
Winter evenings have an upside; they tempt us to sit down with a good book. With that in mind, the Health & Human Rights Unit is delighted to offer a reading recommendation from Mathias Møllebæk, a doctoral researcher at the Copenhagen Centre for Regulatory Science (CORS), Faculty of Health and Medical Sciences, University of Copenhagen
Although I am neither a legal nor a human rights scholar, I follow the Health & Human Rights Unit attentively because of the societal importance of their research projects and because it is a great source of legal perspectives for my own research. I research the rhetoric of pharmaceuticals, which is shorthand for the study of symbolic actions in contexts where pharmaceuticals are involved. Currently, though, I spend most of my time on my doctoral project, which looks at how to improve drug risk communication in the healthcare context.
One of the texts that I keep returning to is Adriana Petryna’s When Experiments Travel: Clinical Trials and the Global Search for Human Subjects. In this exceptionally well-written ethnography Petryna narrates the globalization of clinical research in drug development with particular attention to the ethics of human research subjects. Specifically, she explores how the border between experimental and standard medical treatment becomes blurred when trials are outsourced and how that changes concepts of vulnerability and ethical standards in medical research generally. In what follows I highlight one aspect of Petryna’s book that seems particularly relevant to health and human rights researchers.
Perhaps unsurprisingly, the majority of the medicines consumed in developed countries are licensed on the basis of data obtained from clinical trials performed in less well-developed ones. One prominent reason is treatment saturation within the former group of countries. What does that mean? To be submitted to regulatory review, clinical trials require a population of research subjects that helps show the performance of a drug with the least amount of ‘noise’ from other factors. If potential research subjects are already enrolled in existing trials, or they are using other medications, this could interfere with the experimental treatment. Developed countries are generally too saturated by medical treatment to provide eligible research subjects. Instead clinical trial researchers look for so-called ‘therapeutically naïve subjects’ in localities where medical coverage is significantly lower.
Less developed countries have an interest in attracting the financial investment that a clinical trial represents, as well as the improved treatment of a part of its population. This was the case for Poland, Petryna shows. After the collapse of the Soviet Union in 1989, Poland was struggling economically and became a crucial site in the clinical research economy. The combination of a population that lacked medical treatment (by Western standards, at least) and a well-functioning Soviet medical infrastructure, which connected patients, physicians and hospitals, created a surge in clinical trials and supported the financial boom that Poland experienced towards the early 2000s.
The obvious ethical issue here is: In these cases do clinical researchers exploit human subjects or are they providing a social good? In most cases, participating in clinical trials is the only way to get medical treatment, which often results in patients actively seeking out clinical trials. On the other hand, studies have shown that the continuation of experimental treatment after the clinical trials has been questionable. Petryna, of course, discusses this in detail.
In a broader perspective, Petryna’s study shows that we should pay critical attention to the ethics and legal standards that govern the clinical research industry. As the global market for medicine grows, so does the number of clinical trials for new drugs. As more populations become ‘medically saturated’, and the mobility of clinical trial sites increases, the human rights of research subjects might be compromised further.
Read more on Mathias’ blog Rhetoric of pharmaceuticals
As attention turns to summer reading, the Health & Human Rights Unit is delighted to present a set of recommendations from our QUB Law colleague, Dr Clare Patton.
Clare graduated with her PhD in December 2017. Her area of research considers the impact of the cause-related marketing campaigns of multinational corporations on society, especially in the sphere of creating gendered social roles. She has written mainly about the effect of breast cancer cause-related marketing campaigns on women with breast cancer and more recently has started analysis on baby milk formula corporations.
My PhD considered whether breast cancer cause-related marketing campaigns (CRM) can affect the behaviour (the ‘social role’) of a breast cancer patient. Samantha King’s monograph Pink Ribbons, Inc.: Breast Cancer and the Politics of Philanthropy is an excellent starting point for anyone interested in reading about the corporatisation of breast cancer. Gayle Sulik’s Pink Ribbon Blues: How Breast Cancer Culture Undermines Women's Health is highly recommended as follow-up reading to King’s work as Sulik considers, in great depth, the real impact of pink ribbon culture on the lives of women with breast cancer. My final recommendation in this particular genre is Patricia Strach’s Hiding Politics in Plain Sight: Cause Marketing, Corporate Influence and Breast Cancer Policymaking; Strach’s monograph is exceptionally well-researched and illuminates the powerful influence of cause-related marketing on society— particularly in politics and policy-making decisions.
Having completed my PhD late last year I am presently at a juncture which involves moving beyond the narrow focus that PhD research can involve. I am currently unpacking the area of cause-related marketing (as a broader concept) and particularly in relation to a wider field of causes (beyond the cause of breast cancer). The marketing of breast-milk substitutes is of interest to me personally (as a breastfeeding mother) but is also good fit with my existing research considering that both breast cancer and breastfeeding involve the corporatisation (indeed sometimes the sexualisation) of a personal female issue involving the female body. Save the Children released a report (Don't Push It: Why the formula milk industry must clean up its act) which can be difficult to read in parts but certainly demonstrates the need for urgency in introducing measures which will more firmly limit the marketing of baby milk formula. The article that I am currently writing juxtaposes the CRM campaigns of formula companies in the global north with their marketing of baby formula in the global south. Although The International Code of Marketing of Breastmilk Substitutes is an internationally agreed code of practice it can fail, in some developing economies, to fully hold formula companies to account when they refuse to adhere to this (voluntary) code. Failure to fully regulate the marketing of breast-milk substitutes can lead mothers to either not breastfeed at all or to stop breastfeeding earlier than they would have otherwise. This can be detrimental and harmful to a baby’s health as per the WHO and UNICEF’s Global strategy for infant and young child feeding. Tackling big corporations on the value of their CRM campaigns, especially when situating the campaigns against the cult-like status surrounding breast cancer or the ever controversial issue of breastfeeding, is demanding but I would rather spend my working days on no other topic(s) as the area of CRM is truly fascinating.
On CRM more generally I cannot recommend more highly Barbara Ehrenreich’s Smile or Die: How Positive Thinking Fooled America & The World. Chapter two deals more closely with CRM campaigns but the book is a wonderfully insightful and entertaining read on the pressure (often driven by corporations and large institutions) to ‘put on a happy face’ in every situation.
Finally, a browse through my books reminds me of the joy that ‘reading around’ a topic brings! I thoroughly recommend So You've Been Publicly Shamed as a reminder that it is not only corporations who ought to be careful about online reputational damage and When Breath Becomes Air serves as a reminder that as a person approaches death the narrative of their illness ought to belong to that person. No corporation should ever have more influence in personal areas such as breast cancer or breastfeeding than the individuals who are living through those experiences.
Welcome to the latest posting in our popular segment, ‘What We’re Reading’. This one is from Lauren O’Sullivan, a doctoral student at QUB Law, who is supervised by HHRU’s director, Professor Thérèse Murphy, and Dr David Capper
My PhD thesis, currently titled ‘Are Legal Remedies Killing the Patients? Promoting Obstetrical Clinical Negligence Reform in the UK’, is a socio-legal examination of clinical negligence law in obstetrics cases. It argues that the law, in its current tort-based, common law inception, is costly, cumbersome and needlessly adversarial. It does not suit the needs of claimants or defendants and must be reviewed.
Over the last year I have been fighting the thesis battle on several fronts. Primarily, after a bruising and thorough ethical review process, I have been preparing to conduct qualitative interviews with legal practitioners from across the claimant-defendant divide who specialise in clinical negligence. While researching appropriate methodologies, I read many theoretical theses on qualitative methods and ethnographic, phenomenological approaches (as a general overview for beginners, I really recommend Introducing Research Methodology: A Beginners Guide to Doing a Research Projectby Uwe Flick), but few focused on the nuts and bolts of how to actually conduct an interview.
Anna Bryson and Sean McConville’s Routledge Guide to Interviewing: Oral History, Social Enquiry and Investigationstepped into the breach. From the outset – a non-linear contents page, in which chapters are set out in a circle – it is clear that this book takes a different approach and drives home the message that effective interviews are not a tick-box, one-size-fits-all model; the overall plan and approach may need to be revisited and reformatted. Interviewing is a dynamic process. This book encouraged me to think not merely about what I wanted from interviewees, but what I needed in order to progress my thesis and also helped me to develop skills to encourage people to open up to me. My top tips, based on several interviews and a ton of research, are:
Finally, as I am a masochist who enjoys reading for pleasure as well as for work, I have been reading, and highly recommend, Roxane Gay’s Hunger: A Memoir of (My) Body which is hard-going but inspirational and Jodi Picoult’s Small Great Things which concerns an American medical malpractice case (you can see a theme here!) and racism in America. Absolutely compelling. I’ve also been reading books on hygge and mindfulness to keep balanced. I also really enjoy adult colouring books as a way of decompressing after a day of overthinking!
As the new academic year commences, the Health & Human Rights Unit is pleased to offer reading recommendations on the right to health, complex emergencies and multiple duty- and responsibility-bearers. These recommendations have been prepared by Dr Amrei Müller, the Unit's Leverhulme Trust Early Career Fellow.
I am in the process of researching how the right to health and other human rights could be better protected in situations where this protection can only be achieved through cooperation among multiple state and non-state actors. Intricate legal, practical and normative questions in this regard arise in particular in situations of armed conflict (often also called ‘complex emergencies’), which I aim to tackle in the context of my current research project, Healthcare in Conflict: Do armed groups have obligations and responsibilities?. In recent months, I came across many interesting books, reports and articles touching broadly on relevant issues. A few of those I would like to recommend here.
First, for developing a general framework of analysis, I am intrigued by the work of Professor Samantha Besson. Skillfully combining the work of selected political philosophers with legal analysis, she suggests distinguishing between obligations under international and regional human rights treaties that arise out of relationships of jurisdiction between states and individuals on the one hand, and responsibilities for human rights which arise at all times for states, and arguably also other non-state entities, that do not exercise jurisdiction on the other hand. One article can be recommended in particular: ‘The Bearers of Human Rights Duties and Responsibilities for Human Rights: A Quiet (R)evolution’ (2015) 32 Social Philosophy and Policy 244. Relatedly, I am fascinated by David Miller’s National Responsibility and Global Justice (OUP, 2007), which I think can help human rights lawyers to grasp the numerous normative questions that arise in the aforementioned situations.
Second, for an analysis conducted by human rights lawyers, I can recommend the many contributions in the book edited by Malcolm Langford and others, Global Justice, State Duties: The Extraterritorial Scope of Economic, Social and Cultural Rights in International Law (CUP, 2013). The book broaches many urgent questions, such as the notion of (human rights) jurisdiction, causation and the division or responsibility for violations among many states. It discusses them with reference to relevant practice of international and regional human rights bodies/courts. The edited volume can be read together with the Maastricht Principles on Extraterritorial Obligations of States in the Area of Economic, Social and Cultural Rights and the Commentary thereto (Olivier de Schutter and others in (2012) 34 Human Rights Quarterly 1084).
Third, I have started to zoom in on the specific situations of complex emergencies and the obligations and responsibilities that could flow from the human right to health for different actors involved and affected by these situations, with a focus on non-state armed groups. Recent works that can be recommended on some of the questions that come up in this context are Daragh Murray’s, Human Rights Obligations of Non-State Armed Groups (Hart, 2016) and Katharine Fortin’s, The Accountability of Armed Groups under Human Rights Law (OUP, 2017), as well as reports prepared by the International Red Cross and Red Crescent Movement’s Health Care in Danger initiative, focusing on obligations under international humanitarian law. Among the relevant reports, Safeguarding the Provision of Health Care: Operational Practices and Relevant International Humanitarian Law concerning Non-state Armed Groups are particularly comprehensive.
The Health & Human Rights Unit is delighted to celebrate the Belfast launch of Northern/Irish Feminist Judgments: Judges’ Troubles and the Gendered Politics of Identity with the following post by Unit member, Dr Kathryn McNeilly.
Kathryn took on the challenge of rewriting a Northern Irish judgment concerning health from a feminist perspective. Below, she offers more detail on this and other health-related contributions to this exciting new book. She also tells us about the background to the project, and similar projects in other countries.
The methodology of feminist judging – rewriting existing case law informed by a feminist perspective – has increased in popularity in recent years. Feminist Judgment Projects have taken place in a variety of common law jurisdictions including England and Wales, Australia, the United States of America and Canada. The most recent addition to this list is the Irish context.
In the Northern / Irish Feminist Judgments Project, a collective of feminist legal academics, practitioners, activists and artists collaborated to rewrite, from a feminist perspective, a series of significant legal decisions from Ireland and Northern Ireland. The feminist judges in the Project had to abide by the existing law, legal conventions and evidence in place at the time of the original judgment. The key motivation behind the Project was to show how decisions could have been made differently and/or different legal reasoning deployed. Essentially the Project is an effort to re-imagine law and legal judgment, and to test whether a feminist legal approach is possible and what this would entail.
An edited collection from the Irish project entitled Northern/Irish Feminist Judgments: Judges’ Troubles and the Gendered Politics of Identityhas been published by Hart Publishing (2017). This text offers seminal resources for researchers, law students and legal practitioners to return to 26 key cases in the Northern Irish and Irish jurisdictions and reflect on the significant difference that a feminist perspective might have made on legal reasoning and, often, the material outcome of the case. Alongside the rewritten feminist judgments, the book contains commentaries which put the cases in context, explain the original decision and the approach deployed by the feminist judge, as well as an introductory chapter outlining the Project’s methodology and parameters.
The cases rewritten range across a range of fields including criminal law, family law and judicial review. A significant number of the cases rewritten focus on issues pertaining to health, demonstrating the purchase feminist thinking has for judging in this area. For example, Julie McCandless engages in a feminist rewriting of A and B (by C) v A (Health and Social Services Trust) a case that involved a clinical negligence claim in the context of family treatment. I take on the role of a feminist judge in Re Family Planning Association for Northern Ireland,a judicial review decision relating to the publication of guidelines on the availability of legal abortion in Northern Ireland. Claire McCann continues feminist reconsideration of this latter line of case law in her rewriting of the judicial review decision in Society for the Protection of Unborn Children’s Application for Judicial Review. In the Southern context, Meabh Harding rewrites North Western Health Board v HW and CW (the PKU Case) where the Irish Supreme Court considered the question of whether the state should administer a medical screening test on a child against the wishes of the family. Also relating to health-related case law emerging from the Irish Supreme Court, Ruth Fletcher rewrites the landmark decision in Attorney General v X, reconsidering the approach to access to abortion which was taken in this decision which established a right to abortion on the basis of risk to life.
The Northern/Irish Feminist Judgments book is now available for purchase from the publisher’s website. A collection of additional resources can also be found at the Project’s webpage www.feministjudging.ie.
The Health & Human Rights Unit is delighted to offer Autumn 2016 reading recommendations from Eva Declerck, who has just graduated from the European Master’s in Human Rights and Democratisation, spending one semester in Venice and the other here in Belfast. Eva’s recommendations draw on her Master’s thesis on LGBT* asylum-seekers in the EU.
For the European Master’s in Human Rights and Democratisation, I wrote a thesis called “When The Battle Continues: The (Lack of) Protection of LGBT* Asylum-Seekers in the EU Asylum System”. LGBT stands for lesbian, gay, bisexual and transgender individuals, but following the example of my QUB Law supervisor, Dr Natasa Mavronicola, I chose to add an asterisk. On the one hand, the asterisk symbolises the fact that other acronyms are used as well (like for instance LGBTI, which then includes intersex individuals), and on the other hand, it is a symbol of recognition for those individuals who are categorised as one of these letters although they do not want to be identified as their sexual orientation.
In the thesis, I discussed the challenges that LGBT* asylum-seekers may face in asylum accommodation in Member States of the European Union (EU). There have been testimonies and complaints of physical, psychological and sexual violence. While physical and sexual violence of course have a direct impact on one’s body and can violate the right to the enjoyment of the highest attainable standard of physical health, all three types of violence can affect one’s mental health status. To prevent the recurrence of such violence, LGBT* asylum-seekers may go into self-isolation. This in turn causes them to feel anxious, depressed and sometimes suicidal, and can potentially also be in breach of the right to mental health.
As this situation is clearly problematic, I turned to (the office of) the United Nations High Commissioner for Refugees (UNHCR) to see whether this organisation has some guidance for EU Member States on how to deal with this issue. While there are different reports and policy notes on this matter, I recommend the report of December 2015 ‘Protecting Persons with Diverse Sexual Orientations and Gender Identities: A Global Report on UNHCR’s Efforts to Protect Lesbian, Gay, Bisexual, Transgender and Intersex Asylum-Seekers and Refugees. It is the result of a global assessment UNHCR performed of the progress that has been made with regard to the identification of LGBTI asylum-seekers, the specific protection challenges they face and the search for durable solutions. Together with the International Organisation for Migration (IOM), UNHCR has also developed a training package. Through different modules, it aims to train UNHCR staff as well as the broader humanitarian community on how to protect LGBTI persons in forced displacement.
Another issue I flagged up in my thesis concerning the reception of LGBT* asylum-seekers, is the fact that law on gender reassignment surgery or hormone treatment for transgender asylum-seeker who wish to alter their bodies to have it match the gender they identify as, is often lacking. As a result, access to these treatments for asylum-seekers is usually left to the discretion of the agencies that organise migration accommodation. This legal uncertainty can have detrimental consequences as it does not only have an enormous mental impact, yet can also lead to irreversible body changes. As asylum-seekers and prisoners are both categories of persons that are considered vulnerable by the European Court of Human Rights, an important judgment to await is that in the case of D.Ç. v. Turkey (case no. 10684/13, introduced 24 November 2012, only available in French). It concerns a transsexual prisoner who complains of the fact that the Turkish authorities refuse to bear the costs of his gender reassignment surgery, despite medical evidence that the treatment is urgent. Since their situation has frequently been found comparable, a positive outcome for the applicant could be of high value for transsexual asylum-seekers as well.
Finally, for those more interested in why these individuals have decided to flee their home countries, the report of the Office of the High Commissioner for Human Rights (OHCHR) of 4 May 2015 on the different types of discrimination and violence individuals may face because of their sexual orientation and/or gender identity will be very insightful (A/HRC/29/23, 4 May 2015). And for those who want to learn more about the difficulties LGBT* persons experience when claiming asylum, ‘Fleeing Homophobia: Sexual Orientation, Gender Identity and Asylum’, edited by Thomas Spijkerboer (Routledge 2013) is a great book to read.
For those of you interested in the right to health, here are some reading recommendations from Gema Ocaña, a student member of the Health & Human Rights Unit:
A substantial part of my first year as a PhD student has been devoted to reviewing key literature. I would like to recommend four readings related to the right to health. The first two readings will appeal to those interested in doing research on the philosophical basis of the right to health, whilst the latter two are more legal in their focus.
In his book Just Health: Meeting Health Needs Fairly (CUP 2008), the American philosopher Norman Daniels aims to develop an integrated theory of justice for health in order to address both theoretical and real world challenges. Daniels works mainly on Rawls’ theory of justice as fairness and extends it to address health needs through their connection to the principle of fair equality of opportunity. His theory aims to answer what he calls the fundamental question: What do we owe each other to promote and protect health? He develops two practical methods or tools to guide ‘our health practise’: benchmarks of fairness, which aim in a practical way to guide the just design of health system, and accountability for reasonableness, which aims to be a form of public accountability and a guide in priority-setting processes.
The second book I would like to recommend in the field of philosophy is Health Justice (Polity 2011) by Sridhar Venkatapuram. The author proposes an original theoretical concept: the capability to be healthy. The philosopher expands the theory of capabilities or capability approach of Amartya Sen and Martha Nussbaum to field of health, with the objective to put health at the centre of the theory and practical evaluation of social justice.
Turning now to legal literature, I recommend The Right to Health in International Law (OUP 2012) by John Tobin for those of you seeking an up-to-date account of the international right to health. This book focuses on the right to health as it is formulated in the International Covenant on Economic, Social and Cultural Rights and the Convention on the Rights of the Child. The book is an attempt to provide, as the author states, ‘a middle course between the extremes of great enthusiasm and optimism, manifested by many of the proponents of the right to health, and the deeply pessimistic views of those who doubt that the concept has sufficient traction in terms of coherence, definability, political viability, economic sustainability, or justiciability’.
My fourth and final recommendation is Global Health Law (Harvard 2014) by Lawrence Gostin. Global health law is defined as the study and practice of international law—both hard law and soft instruments—that shapes norms, processes, and institutions to attain the highest attainable standard of physical and mental health for the world’s population. This field emerges as response to globalisation and the urgent need for collective global action to safeguard the population’s health, and more precisely the health of most disadvantaged population. Law and equity play an essential role in this new field, so this reading is perfect for those of you interested in further development of the right to health and social justice to address current health concerns.
More summer 2016 reading recommendations! HHRU has been in touch with Daniela Méndez Royo, a graduate student in the School of Law at the University of Nottingham. HHRU’s Professor Thérèse Murphy was based at Nottingham for many years and taught Daniela during her Master’s.
As a PhD student at the University of Nottingham, I am currently examining the inclusion of an economic and social rights approach in the work of transitional justice mechanisms in Latin America. For a broad examination of the current practice, I recommend the report of the Office of the United Nations High Commissioner for Human Rights, Transitional Justice and Economic, Social and Cultural Rights (2014).
In the context of the role of the judiciary and the obligation to prosecute serious human rights violations committed during the violent period, I recommend Taking Economic, Social and Cultural Rights Seriously in International Criminal Law (Cambridge University Press, 2015), where Evelyne Schmid shrewdly analyses some misunderstandings about the content of economic, social and cultural rights, which is useful to understand the selectivity in international criminal law and transitional justice processes.
Finally, I recommend the book Corporate Accountability in the Context of Transitional Justice (Routledge, 2014) by Sabine Michalowski, where it is possible to find some cases where the role of corporations in past human rights violations is examined by the judiciary or truth commissions.
Need some summer 2016 reading recommendations? HHRU is delighted to offer the following suggestions from LSE Law’s Dr Julie McCandless. Highly recommended for all those interested in reproductive practices in general and in surrogacy in particular.
HHRU will be back in touch with Dr McCandless later this year when Northern/Irish Feminist Judgments, which she is editing with Máiréad Enright and Aoife O’Donoghue, is published by Hart. Definitely one for the must read list!
For quite some time I have been thinking about surrogacy, and the issue of whether and what kind of legal response would be best for this burgeoning reproductive practice. After conducting a research survey for the European Parliament on different models of legal regulation for surrogacy (amongst other issues) I decided to turn away from law and towards ethnographic research on surrogacy for inspiration.
Two recent studies that I have found fascinating are Amrita Pande’s Wombs in Labor: Transnational Commercial Surrogacy in India (2014: Columbia University Press) and Elly Teman’s ethnographic study of gestational surrogacy in Israel, Birthing a Mother: The Surrogate Body and the Pregnant Self(2010: University of California Press). While there are clear differences in the national context in which surrogacy is practised in India and Israel, I was really struck by how similar concerns in relation to highly medicalised pregnancies, and the extent to which surrogates shoulder the risks of the arrangement, were present.
I have been trying to think through how and why similar issues emerge, despite very different legal frameworks – so very comprehensive regulation in Israel, with not very much formal regulation in India. I am working (slowly!) on a theory that the position a national regime takes on legal parenthood, affects the wider framing of surrogacy and how it comes to be practised.
To help develop this theory, I am looking forward to reading more from Kirsty Horsey’s Surrogacy Law Reform Project and her recent survey with the Surrogacy UK Working Group on Surrogacy Law Reform, to see what light it sheds on what is happening in the UK. I was also very excited to see a new ethnographic study of global surrogacy in India published recently: Sharmila Rudrappa’s Discounted Life: The Price of Global Surrogacy in India(2016: New York University Press).
HHRU is delighted to add a new dimension to its ‘What We’re Reading’ page.
Dr Faith Gordon, Visiting Research Fellow at QUB School of Law, recently won a place on the AHRC’s course ‘Engaging with Government’. HHRU asked her to share what she learned: here are her top five tips for early career researchers who want to engage with government.
HHRU is delighted that its New Year’s recommended reads are from Professor Tamara Hervey, who is Jean Monnet Professor of EU Law at Sheffield University.
Professor Hervey is an internationally-recognised expert on EU health law, with whom HHRU’s Dr Mark Flear and Prof Thérèse Murphy have worked closely in the past (eg, all three of us were part of the editorial team on European Law and New Health Technologies published by Oxford UP in 2013). Let’s hope the future brings more exciting opportunities for collaboration.
I have been working on a development of the final three chapters of Hervey & McHale’s European Health Law: Themes and Implications (CUP 2015) for a project with the Observatoire Social Europeen, which will result in a Research Handbook on EU Health Law for Edward Elgar’s research handbook series. This part of Hervey & McHale (or “The Book”, as I prefer to think of it, since it took so long to write) is about the EU’s externally facing health law. It investigates how, if at all, EU law affects or has the potential to affect global health. So my reading is focused on two key areas of investigation: trade and human rights. These are the two principal vectors by which EU health law reaches into global health law. What I am discovering is that they interact in interesting ways.
On trade, the focus of my reading is on the new generation of trade agreements entered into by the EU. Some of these have been in place for a while (the EU-South Korea Trade Agreement entered into force in 2011). Negotiations on the EU-Canada Comprehensive Economic and Trade Agreement were completed in 2014, and the ratification process is under way in the EU and Canada. But the agreement under negotiation that has received the most attention is the Transatlantic Trade Investment Partnership (TTIP), so I have been reading de Ville and Siles-Brügge, The Truth about the Transatlantic Trade and Investment Partnership (Polity 2016) and Cardoso et al, The Transatlantic Colossus: Global Contributions to Broaden the Debate on the EU-US Free Trade Agreement (Berlin Forum on Global Politics 2014). I thought I didn’t know anything really about trade agreements, so it was a pleasant surprise that much of the content resonated with the history of the EU, its creation of a single market through mechanisms of deregulation, and the implications for democratic regulation. The ‘economization of regulation’ isn’t a phrase I’ve read before per se, but its meaning was clear immediately to me. The real surprise in de Ville and Siles-Brügge is that the final chapter is quietly optimistic about, or at least open to, the possibility of reconnecting values-based politics and global trade. However, my observation on this is that the values that are being articulated are those about protecting health and health systems within the EU. Important though that is, it does nothing for the massive disparities in health and resourcing of health systems when looked at globally. Tackling those would involve reorganising global trade in a root-and-branch reform on a scale that is unlikely, given the powerful vested interests in the current direction of travel.
On human rights, I’ve dipped into Biehl and Petryna’s When People Come First: Critical Studies in Global Health (Princeton UP 2013) and read Zuniga, Marks and Gostin’s Advancing the Human Right to Health (OUP 2013). While there isn’t much in the latter that I haven’t read already in some form or another, many of the ideas are taken further than I have seen them taken before. This is particularly true of Joia S Mukherjee’s chapter ‘Financing governments: towards achieving the right to health’. The chapter tackles head-on the notion that states are ‘sovereign’ in a world where trade is global and is conducted on the terms dictated by the IMF and World Bank, as well as those of the WTO. Its author calls for civil society action to assert the ‘right to health’, such as that seen in the AIDS movement and the movement for debt relief. My reflections on this approach include that conceiving of human rights in that way veers more closely to charity than to the revised approach to geo-economics implied by the root-and-branch reform to global trade law that it would take to tackle global health disparities.
In more general reading, I’m slowly working my way through Atkinson’s Inequality: What Can Be Done? (Harvard UP 2015). This is heavy-going for me, as it’s economics! But if lawyers are going to understand how law might be used as one means of tackling inequality, we need to understand at least something about how inequality is understood in other disciplines. Also in general self-education, I’ve been trying to understand more about contemporary geo-politics, and in particular Daesh, by reading things like this.
Finally, on a more frivolous level, an overnight flight from the US, after visiting the health law folks at Robert H McKinney Law School, Indiana, saw me consume Lisa McElroy’s Called On, a light-hearted novel about US law schools.
Looking for some reading for the winter season? Try these recommended reads from Dr Kathryn McNeilly, HHRU's newest member:
Recently I have been thinking through ideas of vulnerability in my reading. I have been returning to Martha Fineman and Anna Grear's 2013 collection Vulnerability: Reflections on a New Ethical Foundation for Law and Politics and Fineman's 2008 article 'The Vulnerable Subject: Anchoring Equality in the Human Condition' (published in the Yale Journal of Law & Feminism). I have also been engaging with Judith Butler's thoughts on vulnerability and the physical body in her newly published book Notes Toward a Performative Theory of Assembly. I would thoroughly recommend these reads for those interested in thinking about challenges to sovereign approaches to life and the relation of these approaches to issues such as gender, our bodily lives and law.
My recent reading on human rights more generally has included the 2014 edited collection by Costas Douzinas and Conor Gearty, The Meanings of Rights: The Philosophy and Social Theory of Human Rights which has been providing stimulating thinking on rights and power, radical politics and critical engagements with the foundations of human rights.
Dr Rosa Freedman is a Senior Lecturer at Birmingham Law School at the University of Birmingham and author of two books, Failing to Protect: The UN and Politicisation of Human Rights and The United Nations Human Rights Council: An Early Assessment. Her latest article is '"Jistis ak Reparasyon pou Tout Viktim Kolera MINUSTAH": The United Nations and the Right to Health in Haiti' (2015) 28 Leiden Journal of International 507-527. Currently, with both Prof Aoife Nolan (Head of the Economic & Social Rights Unit, Human Rights Law Centre, University of Nottingham) and HHRU's director, Prof Thérèse Murphy, she is working on a project about the UN Special Procedures. Prof Murphy took the opportunity to ask her for some reading recommendations:
I am currently reading Inga Winkler's book The Human Right to Water: Significance, Legal Status and Implications for Water Allocation. Although I started reading this in relation to an ongoing project on Haiti, cholera and the UN, I have found myself engaged in the material beyond how it informs and assists my own research. Winkler provides a comprehensive, informative and engaging discussion about water and human rights. This is an area that impacts upon the realisation of so many other human rights yet has received insufficient academic attention. She skillfully approaches the area with a multidisciplinary lens, erduitely demonstrating the links between water and a great range of issues. I highly recommend Winkler's book both in terms of substance and style -- it will be of interest to those interested in human rights, development, health, and many other related areas.
The other book that I have been thoroughly enjoying, albeit dipping in and out of it over a few months, is Jonathan Haidt's The Righteous Mind. Despite my scepticism about these types of books, Haidt interrogates and gets to grips with why good and moral people may hold such differing opinions to one another where it comes to politics and religion. Of course, I tend to map his arguments across onto matters such as securitisation of migration or women's reproductive health, but the great thing about this book is that it helps the reader to engage with such a broad range of current events.
Other than those two books, I have mainly been immersed in literature on (i) the UN Sustainable Development Goals and (ii) the UN human rights machinery, in an attempt to try to join some dots regarding monitoring and accountability -- but given that those dots have yet to be joined, I cannot recommend anything specific at this present time.
Dr Rosa Freedman, November 2015
HHRU Director Prof Thérèse Murphy has been in contact with Claire Lougarre from the School of Law at the University of Southampton in the UK. She asked Claire to share her latest reads:
Following the adoption of the SDGs at the UN this month, I have started reading Brolan, Hill and Ooms, ‘“Everywhere but Not Specifically Somewhere”: A Qualitative Study on Why the Right to Health Is Not Explicit in the Post-2015 Negotiations’ (2015) 15 BMC International Health and Human Rights 22 (http://www.biomedcentral.com/1472-698X/15/22). Fascinating article as its authors analyse why the right to health failed to appear in the three key SDG proposals in 2014, by carrying out interviews with key actors.
On my right-to-health reading list, I would also add the 2015 annual report of the Special Rapporteur on the right to health, Mr Dainius Puras. After having met him in Berlin last month, I read his 2015 annual report: Special Rapporteur on the right of everyone to the enjoyment of the highest standard of health attainable, ‘Report to the Human Rights Council (focus: Work of the Mandate and Priorities of the Special Rapporteur)’ UN Doc A/HRC/29/33 (http://www.ohchr.org/EN/Issues/Health/Pages/AnnualReports.aspx). Interesting to see what priorities Mr Puras, a medical doctor, is setting--amongst others, the strengthening of health systems through a policy approach to the right to health, mental health, and the right to health of persons with disabilities.
Like Thérèse, I am also very much enjoying 'The International Covenant on Economic, Social and Cultural Rights: Cases, Materials and Commentary' (2014, Saul, Kinley & Mowbray). Finally a book with an in-depth analysis of the Travaux Préparatoires for almost each provision of the Covenant!
Finally, I would recommend reading the report of the IPPF (European Network), ‘Barometer on Women’s Access to Modern Contraceptive Choice’ (2015). Definitely a long way to go for reproductive rights in Europe....
Here is what Dr Mark Flear is reading as we head into the start of the 2015/16 academic year:
I'm reading up for my ‘Bad Blood Project’, which concerns the ongoing regulatory discussion about reform of blood donation by ‘men who have sex with men’ (MSM). My initial spur for the project came from cases on MSM blood donation from the High Court in Northern Ireland (JR65’s Application  NIQB 1; JR65’s Application  NIQB 101) and a judgment of the Court of Justice of the European Union on the French ban on MSM donation (Case C-528/13 Geoffrey Léger v Ministre des Affaires sociales, de la Santé et des Droits des femmes and Établissement français du sang (not yet published)). In order to understand the issues raised by these cases I’ve been reading quite a mix! Thomas Strong’s 2009 article ‘Vital publics of pure blood’ is so rich and has some interesting things to say, so it’s been at the top of my ‘read and reread’ list. More broadly I’ve been enjoying Science and Public Reason (2012) edited by Sheila Jasanoff. I like what she has to say about law/science relations in her editorial; and I think she’s correct to point out how little science and technology studies has had to say about law. I tend to think law isn’t just playing catch-up with science and technology: law is important to how they develop, and for that reason alone it warrants further attention.
We caught up with Professor Thérèse Murphy to find out about her summer 2015 reading:
As usual, it was quite a mix. But a favourite would be The International Covenant on Economic, Social and Cultural Rights: Cases, Materials and Commentary (2014, Saul, Kinley & Mowbray), an extraordinarily rich treatment of a core international human rights instrument. I’m just starting to read Caring Autonomy (2015) by Katri Lõhmus. This book is based on Katri’s PhD at Edinburgh University which I examined a couple of years ago, and I’m looking forward to revisiting her fresh take on autonomy. Another, much shorter piece I’ve enjoyed recently is Mikel Mancisidor’s ‘Is there such a thing as a human right to science in international law?’ Mikel posted it online in spring 2015 and I’ve now re-read it several times. I agree with him that it’s clear there is such a right; I also agree that it’s under-discussed and its content needs to be clarified and specified.
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