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WELMA's mailservice no. 5 - 2014 - Special Edition

Dear newsletter reader

This second special edition of WELMA’s newsletter is prepared by the Health Law Group with assistance of project assistant Anders Trebbien Daugaard and project assistant Tine Pedersen. It focuses on its members' research themes which cover areas such as patients rights, legal perspectives of obesity as a life style disease, legal regulation of aesthetic treatment, discrimination and stigmatization in health care and legal perspectives of genetic technologies. For a more comprehensive description of these themes, please see WELMA’s homepage. The group consists of professor Mette Hartlev, Post. Doc. Ida Asmussen, PhD Fellow Céline Brassart Olsen, PhD Fellow Diana Nacea and PhD Fellow Katharina O Cathaoir

We hope you will enjoy this special edition and find it informative and inspiring.

Kind regards,

Prof. dr. jur. Mette Hartlev, Head of Centre

In this issue

1. Research trends

Research project “Governing obesity”

International Association of Bioethics 12th World Congress

2. Selected case law

Advocat General’s Opinion in Case Kaltoft v. Municipality of Billund – obesity as a disability

Petrova v. Latvia (Appl. No. 4605/05) - Organ transplantation violated the European Convention on Human Rights

Centre for Legal Resources on behalf of Valentin Campeanu v. Romania (Appl. No. 47848/08)

Advocate General’s Opinion in Case C-528/13 – indirect discrimination in blood donation

Burwell v. Hobby Lobby Stores Inc 573 U.S. _ (2014) – Corporative religious freedom versus reproductive health services

3. Reports

New report by UN Special Rapporteur on the right to health

4. News, important dates, events

New article on human rights aspects of using stigma as a public health tool against obesity

Conference on “Cross-border Healthcare law in the European Union: Current Status and Implications’

5. Beyond research

The Medical Museion

1. Research trends

Research project “Governing obesity”

Members of Welma’s health law group take part in the interdisciplinary research project Governing Obesity. This project is based on an internal grant from the ‘UCPH Excellence Programme for Interdisciplinary Research’ (2016).

To better understand obesity, it must be addressed by combining insights on human physiology, biomedicine, epidemiology, history, societal structures, social institutions and political regulation and many more. Governing obesity is structured around five research themes, and Welma’s health law group work together with researchers from epidemiology, social sciences and humanities to investigate when and how public intervention is required and seen as legitimate from the perspectives of rights to health, privacy, non-discrimination, justice and beneficence. The legal research is centered on three projects:

PhD Fellow Céline Brassart Olsen:

Obesity is increasingly recognized as a global issue. Studies show that it is not only caused by individual behavior, but also by global environmental and socio-economic factors. Therefore, it has been suggested that obesity should also be addressed by global governance measures tackling the global corporate and societal factors at play in the obesity epidemic. The research project seeks to explore the possible use of law and regulations in obesity prevention at global level. It investigates the theoretical grounds for obesity prevention and the application of the human right to health in this context. It analyses the current international instruments for obesity prevention and their possible tension with some individual rights and freedoms, particularly the rights to privacy and self-determination. It also explores the notion of “responsibility” in this context. The research project examines the possibility to adopt a combined "public health and human rights" approach for obesity prevention. This approach requires to look at existing public health interventions at global level, namely in tobacco control and HIV/AIDS. The project conducts a comparative analysis between obesity prevention and tobacco control, with a particular focus on the justifications for the adoption of the WHO Framework Convention on Tobacco Control in 2003. It also explores the approach used in the context of HIV/AIDS, where public health and human rights have been combined in order to avoid the harmful effects of stigmatization, which is relevant in the context of obesity.

PhD Fellow Katharina Ó Cathaoir:

Childhood obesity is considered a serious health crisis in Europe with rates having trebled in many countries since the 1980s. The causes of childhood obesity are multifaceted and require the same approach. One aspect which is of particular focus is the “obesogenic environment” which explores how the environment around us shapes our food and exercise habits, and contributes to obesity.

This research focuses on state responses to childhood obesity from a human rights perspective. Firstly, it asserts that international human rights law provides a basis for tackling this environment. Secondly, it explores how an approach inspired by the Convention on the Rights of the Child (and other human rights instruments) would shape and add to national obesity plans of action.

The research explores two aspects of the European food environment and how they may be reshaped through law and policy using an overarching human rights approach to help contribute to healthful choices. The first is the need and justification for a measure to tackle marketing of HFSS foods to children. The second is state intervention in the school environment. The question of how the state achieves a balance between parental responsibility and child protection is also explored, as well as the concept of human rights and corporations.

Professor Mette Hartlev:

The project aims at analysing discrimination and stigmatisation of obese persons in various settings (e.g. the labour market, insurance services, health care and educational facilities and social services) from a health and human rights perspective.

See more information about Governing Obesity here
See more information on the health law group's projects here

International Association of Bioethics 12th World Congress

Phd Fellows Céline Brassart Olsen and Diana Nacea represented the Faculty of Law at the International Association of Bioethics 12th World Congress in late June 2014, held in Mexico City.

Céline Brassart Olsen presented a paper addressing the differences and similarities between tobacco control and obesity prevention from an ethical and legal perspective, while Diana Nacea presented a synthesis on the legal aspects of the upcoming European standards for cosmetic surgery services.

The common characteristic of the conference panels, reuniting 1200 participants, was the multinational and multidisciplinary background of the researchers' groups: philosophers, medical doctors, biologists, sociologists, theologians, and lawyers, debating on currently developing policies in bioethics.

Three topics gained bioethicists' attention, from a policy-maker's standpoint: stem cell research and therapies, where the major controversies revolve around the use of embryonic stem cells and the commodification of human embryos; mitochondrial replacement that implies the creation of embryos with three genetic parents, while aiming at preventing debilitating muscular diseases, and euthanasia and the legal status of patients in deep sedation.

In a separate session on Food Choices and Responsibility, the panelists highlighted the limits of framing the issue of obesity as a mere conflict between individual autonomy and government responsibility. They emphasized the importance of collective values such as solidarity and social justice, and the moral obligations of other stakeholders such as the food industry, schools, retailers and families.

The next World Congress of the International Association of Bioethics will take place in Edinburgh, in June 2016.

Go to the website of the next Congress

2. Selected case law

Comment to Kaltoft v. Municipality of Billund – Obesity as a disability

By PhD Fellow Katharina Ó Cathaoir

Advocate General Jääskinen addressed whether obesity is a disability, in his recent anticipated opinion. The case has garnered media attention with practitioners and journalists concerned by its implications for employers and health. The AG’s opinion is non-binding. The Court will issue its own judgment in the next few months, which will be binding on EU member states. However, in general, the Court tends to follow the AG’s opinion, although it is free to depart therefrom.

Kaltoft worked as a child minder for 15 years with the Municipality of Billund. For the entirety of this time Kaltoft was obese, weighing no less than 160kg. Contrary to what has been reported, it has not been established that Kaltoft was dismissed due to his obesity. Instead, both parties appear to maintain that Kaltoft was fully capable of fulfilling his position. Kaltoft, however, alleges that his obesity was broached at his dismissal hearing and declared a reason for the decision. As a result, he argued unlawful discrimination due to his obesity and sought damages in a Danish court. The court then referred to the CJEU for preliminary ruling.

The AG excluded the possibility that obesity per se would amount to a disability under Directive 2000/78. However, obesity of a certain severity may amount to a disability, provided it fulfils the criteria laid out in case law. Thus, the AG concluded that “most probably only WHO class III obesity, that is severe, extreme or morbid obesity will create limitations, such as problems in mobility, endurance and mood”.

Disability is not defined by the Employment Equality Directive. The AG followed the definition of disability offered in previous case law:

“A limitation which results in particular from physical, mental or psychological impairments which in interaction with various barriers may hinder the full and effective participation of the person concerned in professional life on an equal basis with other workers.”

Interestingly, the AG also addressed the issue of the origin of the disability. Whether the person’s obesity can be traced to his own behaviour or an external factor was deemed irrelevant. The AG pointed out that many other disabilities may occur due to negligence or risk taking and avoid the moral spotlight.

Under the EU Employment Equality Directive, an employer has a duty to reasonably accommodate an employee with a disability. The duty is not absolute and the employer may show as a defence that accommodation would impose a “disproportionate burden”. Furthermore, as the AG highlighted, the employer is not required to maintain an individual who cannot “perform the essential functions of the post”. Thus, some of the panic regarding the wide reaching ramifications of the decision appears exaggerated.

The experiences of persons with obesity should not be ignored. Discrimination in employment and healthcare is well documented. The AG has adopted a cautious position whereby only severe obesity could be a disability on its own. In reality, this covers only a small percentage of persons with obesity, especially considering the long term requirement.

It is contended that stigma and discrimination should never be in the arsenal of a state’s public health policy. Indeed, it appears that shame is a major factor that inhibits persons with obesity from engaging with health care professionals and exercise. Thus, stigma is unlikely to decrease obesity. Furthermore, having a disability should not be seen as infantilising but instead encouraging full and equal participation.

Despite showing an understanding influenced by a rights based approach, the AG’s approach of labelling people with obesity of a certain severity needs further exploration. It is not fully clear as to why the AG identified Class obesity III in particular as the only category per se justifying recognition as a disability. Finally, employers must avoid stigmatising or insensitive identification of employees on the basis of physical characteristics, no matter how well intentioned.

Read the opinion here
Further comment by PhD Fellow Katharina Ó Cathaoir

Petrova v. Latvia (Appl. no. 4605/05) - Organ transplantation violated the European Convention on Human Rights

By Project Assistant Anders Trebbien Daugaard

The case concerned a 23-year old patient who deceased in the hospital. His kidney and spleen were afterwards taken out. There was no prior consent to organ transplantation. The mother filed a case by the national authorities with the claim that she had not been given an opportunity to present her wish concerning transplantation. The Latvian legislation on organ donation was based on an “assumed consent”. The law gave near relatives a right to present their wishes concerning – hereunder to deny – organ transplantation, but there was no explicit obligation to actively contact and obtain the wishes of the near relatives.

The Court found that the right to respect for private- and family life had been violated (ECHR art. 8). The justification of the violation was dependent on whether it was “in accordance with the law”, since the relatives were given a right in national legislation to present their wishes on transplantation.

The Court found that national legislation did not sufficiently protect the rights of the near relatives. The transplantation without notification of the mother was therefore not “in accordance with the law”. The violation could already therefore not be justified and the transplantation was in final violation of the convention.

Read the judgment here

Centre for Legal Resources on behalf of Valentin Campeanu v. Romania (Appl. No. 47848/08) - Legal representation by a non-mandated NGO and the violation of the right to life through acts of omission in healthcare delivered by state institutions

By PhD Fellow Diana Nacea

In July 2014, in the Case of Centre for Legal Resources on behalf of Valentin Campeanu v. Romania, the Grand Chamber of the European Court of Human Rights (ECtHR) found violations of the right to life, both on the substantive and the procedural aspects of Article 2 of the European Convention and furthered its case law regarding the legal representation before the Court of an individual by a non-governmental organisation in the absence of any mandate or standing as an indirect victim. The case was lodged by an NGO and concerned the death of an 18 year old man, of Roma minority, who was diagnosed as HIV positive and suffering from severe mental disabilities, and had died in a psychiatric hospital.

Though the European Convention on Human Rights does not extend its protection in an overt manner to the right to health, the violation on both the substantive and the procedural aspects of Article 2 in the present case results from acts of malpractice: ill-treatment and abuse committed by medical personnel, acts of omission as deprivation of adequate medical treatment, deficient record keeping and failure to perform an autopsy immediately after death, as well as failure in providing explanations for contradicting findings. The ill-fated young man's suffering is now a legal tool in defending the right to health through the use of Article 2, and lays out grounds for a similar analysis for the protection of the right to health under the protection of the rights under Article 3, as detailed in one of the three separate opinions.

See a more comprehensive description of the facts and analysis of the case here

Advocate General’s Opinion in Geoffrey Léger v Ministre des affaires sociales et de la santé and Établissement français du sang (Case C-528/13) - Indirect discrimination in blood donation

By PhD Fellow Katharina Ó Cathaoir

This July, an Advocate General of the European Court of Justice, Paolo Mengozzi, issued an opinion on indirect discrimination based on sexual relationship in the context of blood donation.

On 29 April 2009, Geoffrey Léger was rejected from donating blood on the grounds that French law permanently excludes men, who have had, or have, sexual relations with other men, from giving blood. Léger challenged that decision in his national tribunal administratif de Strasbourg which requested a preliminary ruling from the Court of Justice on whether this permanent exclusion is compatible with the EU Directive (Commission Directive 2004/33/EC of 22 March 2004 implementing Directive 2002/98/EC of the European Parliament and of the Council as regards certain technical requirements for blood and blood components (OJ 2004L 91, p. 25). According to the Directive, persons whose sexual behaviour puts them at high risk of contracting severe infectious diseases that can be transmitted by blood are permanently excluded from giving blood.

In his opinion, AG Paolo Mengozzi stated the mere presence of sexual relations with a man may not amount to sexual behaviour. Sexual behaviour would relate to the specific circumstances of the sexual relations. The AG recognised that under the Directive Member States may apply more stringent protective measures. However, the effect of this measure in French legislation, in his view, amounts to indirect discrimination. Although it pursues a legitimate aim: the protection of public health, it may go beyond what is proportionate. The AG noted that France would have to determine whether this ban was supported by scientific evidence and whether a less restrictive measure would be possible, such as a window period. For instance, under French legislation, a person whose partner is HIV positive is only subject to a four month deferral from donating blood.

The Advocate General’s Opinion is not binding on the Court of Justice. It is the role of the Advocates General to propose to the Court, in complete independence, a legal solution to the cases for which they are responsible. The Judges of the Court then give a binding judgment at a later date.

Read the opinion in Danish
Read the opinion in French
Further background information is available here

Burwell v. Hobby Lobby Stores Inc 573 U.S. _ (2014) – Corporative religious freedom versus reproductive health services

By PhD Fellow Katharina Ó Cathaoir

In June, The U.S. Supreme Court ruled that Hobby Lobby, a privately owned corporation, possesses personal rights to religious freedom. Thus, the company has the right to refuse to comply with federal regulations requiring employer paid health insurance covered by the Affordable Care Act (the ACA) to make specified contraceptives available to employees.

Under the ACA, companies with over fifty employees are required to cover the costs of preventative health insurance or provide tax subsidies to the State to do so. The Hobby Lobby decision applies to privately held companies, half of whose stock is owned by five people or less. This appears to amount to 90% of American companies.

Under the Religious Freedom Restoration Act of 1993 (RFRA), the Government is prohibited from “substantially burden(ing) a person’s exercise of religion …” unless the Government “demonstrates that application of the burden to the person — (1) is in furtherance of a compelling governmental interest; and (2) is the least restrictive means of furthering that compelling governmental interest.”

The Supreme Court found that the owners of Hobby Lobby and two other corporations have sincere religious beliefs that life begins at conception, and that it would violate these beliefs to facilitate access to certain contraceptive drugs or devices. The burden placed on the company was substantial as if it acted in line with its religious convictions and failed to cover the contraceptives, it would be hit with millions of dollars in fines.

Read the decision
Read PhD Fellow Katharina Ó Cathaoir's comment to the case here

3. Reports

New report by UN Special Rapporteur on the right to health

By PhD Fellow Céline Brassart Olsen

In April 2014, the UN Special Rapporteur on the right to health issued a report on “unhealthy foods, non communicable diseases and the right to health.” In this report, the Special Rapporteur recognizes that structural, systemic and societal factors are largely at stake in the obesity epidemic, and that responsibility can not only be attributed to individual behavior. He particularly highlights the role of the food and beverage industry. The Special Rapporteur emphasizes that States have an obligation to respect, protect and fulfill the right to health and the right to adequate and nutritious food. States can realize these rights by adopting measures aiming to reduce the production and consumption of unhealthy foods and increasing the availability and affordability of healthier foods alternatives. Examples of such measures are the provision of information, fiscal policies, the regulation of marketing and promotion of unhealthy foods and policies on foreign direct investments. He also recognizes that the food industry has the responsibility to respect the right to health and must therefore comply with laws that discourage the consumption of unhealthy foods. Children, women and lower-income groups are recognized as specific targets of the food industry and who need particular attention. He also stresses the need for various accountability and remedial mechanisms for the realization of the right to health. He underlines the importance of international assistance and cooperation, and suggests the adoption of an international framework to hold the global food industry legally accountable for its actions.

Read the report

4. News, important dates, events

Professor Mette Hartlev publishes article on human rights aspects of using stigma as a public health tool against obesity

In "Stigmatisation as a Public Health Tool against Obesity - A Health and Human Rights Perspective" Mette Hartlev makes a critical analysis of use of stigma as a public health tool. The right to health is recognised in human rights law and it imposes a duty on governments to put in place a system of health protection making it possible for individuals to enjoy the highest attainable standard of health. However, disease patterns are changing, and increasing attention is being paid to so-called lifestyle diseases. Individuals may expose themselves to health threats due to personal choices like eating and smoking habits, and this raises the issue of the individual’s obligation with regard to ill health. Hence, is there not only a right to health but also a duty to be healthy? Using obesity as an example, and based on a cross-disciplinary research, Mette Hartlev analyses selected European and national public health policy papers to see how individual rights and duties are framed and to analyse the use of stigmatisation as a public-health strategy from a health and human rights perspective.

The article is published in European Journal of Health Law 21 (2014), pp. 365-386.

Conference on “Cross-border Healthcare law in the European Union: Current Status and Implications’

30th October 2014 at University of Copenhagen, Department of Political Science

More information about the conference at the website of the Department of Political Science

5. Beyond research

The Medical Museion

By PhD Fellow Diana Nacea

Formally the Royal Academy of Surgeons and the Royal Fredrik's Hospital, the building in Bredgade 62 now hosts the Copenhagen's Medical Museion, a nice place to turn a couple of hours into an interesting indoor walk. The first rooms' exhibits, just dusty enough to recreate the atmosphere of their time, will fascinate those with a passion for the palpable human nature, while those more inclined towards metaphysics can enjoy the examination rooms, the auditorium, the "pill rollers' " pharmacy, and the skilfully balanced stories told by the tour guides.

19th century caricatures of dentists and early 20th century photographs, along with medical instruments and contraptions will treat those melancholic for living in the times of no antibiotics or anaesthesia, and will make you take note of those names who contributed to the understanding of the "chemical body".

Unlike homologous museums which follow the evolution of instruments over hundreds of years, here you will receive a picture of the medical understanding and their associated practices at different moments in time.

Plan your visit as to allow for an hour before or after the guided tour for visiting the entire museum and reading the "small print" - explanations can have an "aha" effect. As well, children can benefit from an age appropriate guided tour (in Danish).

Website of the Medical Museion

 

Kind Regards

WELMA 

WELMA - Legal Studies in Welfare and Market

University of Copenhagen. Studiestræde 6, 1455 København K. 

+45 35 32 26 26 - www.welma.eu  

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Sendt d. 12. september 2014