Friday, July 11, 2014

Convention against Organ Trafficking

On the 9th of July the Committee of Ministers took an important ste against forms of commercialisation of organs when it adopted the Convention against Trafficking in Human Organs.

The new instrument stresses that human organs shall not be bought or sold or give rise to financial gain or comparable advantages for the person from whom they have been removed or for a third party. It allso calls on states to criminalize the illegal removal of human organs from living or deceased donors without proper consent or authorization, or for financial gain or advantage. The convention provides for protective measures and sompensation for victims as well as prevention measures to ensure transparency and equitable access to transplantation services.

The Explanatory Report to the Convention can be found here.

The press release and the related statement of the Committee of Ministers can be found here and here.

Marta López at al. published a comment "A needed convention against the trafficking in human organs" in the Lancet.The conclusion of the article is as follows:
[...] the Convention will be a seminal international legal instrument that for the first time reaches illicit transplant practices that currently escape prosecution. By complementing each other, this Convention on trafficking of human organs and the instruments on human trafficking for organ removal provide a comprehensive legal framework to prevent and combat transplant activities that violate basic human rights. The worldwide problem of organ trafficking can only be addressed through concerted action at global level. Therefore, we urge all countries to quickly become Parties to the Convention.
The article can be found here.

Thursday, June 19, 2014

Genetic and Biometric Information to Become Sensitive Data

Source: www.coe.int
The European Conference of Dat aProtection Authorities was held on the 5th of June 2014 in Strasbourg, France. The event brought together representatives of over 40 national and sub-national European data protection authoritiesto discuss how to strengthen European and international cooperation in this field. The theme of the conference was “European and international cooperation in the field of data protection”.

The representatives adopted a resolution on the revision of the Convention for the Protection of Individuals with regard to Automatic Processing of Personal Data (Convention108). This document calls on CoE member states and the states parties to Convention to preserve and, where possible, increase the current level of protection afforded by the Convention and, in particular, to "[p]lace genetic data and biometric data in the sensitive data category".

Broadening the scope of the notion of "sensitive data" towards these two kinds of personal information is a very significant step. Since genetic data may contain information on one's genetic characteristics, and hence on one's (genetic) health status, furthermore these genetic characteristics may be related not only to the person concerned but to other family members such as parents, grandparents, children or siblings. Therefore it was obvious to recognize these information as sensitive data.

On the other hand, biometric data besame more and more frequently used outside of the government sector. Private companies or even persons may afford biomertric technologies these days. The risk of abuse of personal data becomes more and more relevant. Although one of the main agruments for the use of biometric systems is enhanced security, one must not forget the importance of the right to informational self-determinatio and to the respect for private life. Simple security reasons must not justify in themselves the limitation of one's rights. Therefore biometric data deserve the protection afforded to sensitive data.

It must also be noted that on the same day of the conference, the Council of Europe and the European Union Agency for Fundamental Rights (FRA) launched the second revised edition of a handbook on European data protection law.

Friday, May 30, 2014

Interagency Statement on Forced, Coerced or Otherwise Involuntary Sterilization

The OHCHR, the UN Women, the UNAIDS, the UNDP, the UNFPA, the UNICEF and the WHO issued an interagency statement on "Eliminating forced, coercive and otherwise involuntary sterilization."

Here is the abstract:
Like any other contraceptive method, sterilization should only be provided with the full, free and informed consent of the individual. However, in some countries, people belonging to certain population groups, including people living with HIV, persons with disabilities, indigenous peoples and ethnic minorities, and transgender and intersex persons, continue to be sterilized without their full, free and informed consent.

This statement aims to contribute to the elimination of forced, coercive and otherwise involuntary sterilization. It reaffirms that sterilization as a method of contraception and family planning should be available, accessible, acceptable, of good quality, and free from discrimination, coercion and violence, and that laws, regulations, policies and practices should ensure that the provision of procedures resulting in sterilization is based on the full, free and informed decision-making of the person concerned.

Thursday, May 29, 2014

Events organised by UNESCO

There is two interetesting events organised by the United Nations Educational, Scientific and Culrtural Organisation this June.

1Firstly, the UNESCO will host a public seminar "Towards Global Justice - Providing Life-Saving Medicines to the Poor" in Paris on the 6th of June 2014. At this event to renowned professors "will explain proposals for ensuring better acces to life-saving medicines for the poor." Those who are interested can read an interview with professor Thomas Pogge and Aidan Hollis here.

The second event is the "10th Global Summit of National Ethics and Bioethics Committees" held in Mexico City between 22nd and 24th of June 2014.

Tuesday, May 6, 2014

Launching Conference of the Guide on the Decision-Making Process Regarding Medical Treatment in End-of-Life Situations

Source: www.elderbranch.com
The Launching Conference of the Guide on the decision-making process regarding medical treatment in end-of-life situations, organized by the Committee on Bioethics of the CoE, toook place today - on the 5th of May 2014 - in Strasbourg, France. The objective of this conference was not only to present the Guide, but also to benefit from the feedback of professionals and patients on this document.


You can find the program here.

If You are interested, watch the retransmission here.

L.H. v. Latvia

In the case of L.H. v. Latvia (Application no. 52019/07) the ECtHR found a violation of Article 8 of the Convention regarding the processing of health data without sufficient legal basis by a Latvian authority.

Facts

While the applicant, L. H., was giving birth in 1997, a Caesarian section was used and in the course of that surgery a tubal ligation, resulting in sterilisation, was performed without her consent. Following an unsuccessful attempt to achieve an out-of-court settlement, she brought civil proceedings against the district hospital in February 2005 and, in December 2006, was awarded compensation for the unauthorised sterilisation. In the meantime, in February 2004, the Inspectorate of Quality Control for Medical Care and Fitness for Work (MADEKKI), on request by the district hospital’s director, initiated an administrative inquiry concerning the gynaecological and childbirth assistance provided to Ms H. from 1996 to 2003. The MADEKKI received medical files from three medical institutions and, in May 2004, issued a report containing sensitive medical details, and the summary of the conclusions was sent to the hospital director. Ms H.’s lawyer lodged a claim before the administrative courts, complaining that the inquiry had been unlawful, in particular since its essential purpose had been to help the hospital to gather evidence for the impending litigation, which was outside the MADEKKI’s remit. The lawyer also requested to annul the report. Ms H.’s claim was rejected by the Administrative District Court in a decision eventually upheld by the Supreme Court (SC) in February 2007.

In her application Ms. L.H. complained that the collection of her personal medical data by a State agency had violated the right to respect for her private life, guaranteed by Article 8 of the Convention.

Violation of Article 8

Since there was no contradiction between the parties that the applicant’s medical data formed part of her private life and therefore the collection of such data by the MADEKKI constituted an interference with her right to respect for her private life, the Court proceeded to analyze whether the interference complied with the requirements of the second paragraph of Article 8 of the Convention.

The ECtHR reiterated that the expression “in accordance with the law” requires that
the impugned measure to have some basis in domestic law, which should be compatible with the rule of law, which, in turn, means that the domestic law must be formulated with sufficient precision and must afford adequate legal protection against arbitrariness. Accordingly the domestic law must indicate with sufficient clarity the scope of discretion conferred on the competent authorities and the manner of its exercise.
In this respect it noted that the Government referred to interpretation of the domestic law of the SC regarding the relevant domestic law, according to which the authority may assess the quality of medical care provided in medical institutions upon receiving requests from medical institutions, and was authorized to collect information and documents relating to questions within its field of competence.Therefore, since errors of fact or law allegedly committed by a national court falls under the Court’s supervision in so far as they may have infringed rights and freedoms protected by the Convention, it turned to the interpretation of section 11(5) of the Personal Data Protection Law (DPL) given by the Supreme Court. This section provides that personal data may be processed without the consent of the data subject if it is necessary for the purposes of medical treatment or the provision or administration of heath care services.


It noted that the MADEKKI started to collect the applicant’s medical data seven years after her sterilisation, during the civil litigation. In the Court’s view this lengthy delay raises a number of questions: whether data collection can be deemed to have been necessary for the purposes set out in section 11(5) of the DPL, if the actual health care services had been provided years earlier. “Such a broad interpretation of an exception to the general rule militating against the disclosure of personal data might not offer sufficient guarantees against the risk of abuse and arbitrariness.” Secondly, the applicant had never been informed that the MADEKKI had collected and processed her personal data. And thirdly, the hospital itself was never given any recommendations on how to improve its services, it only received information pertained specifically to the actions of the doctor responsible for the applicant’s treatment.

The ECtHR further found that that the applicable legal norms describing the competence of the MADEKKI are formulated in a very general fashion. However the SC failed to explain which of its functions the MADEKKI had been carrying out or what public interest it had been pursuing when it issued a report on the legality of the applicant’s treatment. Accordingly it did not and could not examine the proportionality of the interference with the applicant’s right to respect for her private life against any public interest. Moreover, the relevant domestic law in force at the time did not provide for the right of the data subject to be informed that the MADEKKI would be processing his or her data before the commencement of the collecting. The authority therefore was under no legal obligation to take the data subject’s views into account concerning decisions related to its data processing.



The ECtHR reiterated that
the protection of personal data, not least medical data, is of fundamental importance to a person’s enjoyment of the right to respect for his or her private life as guaranteed by Article 8 of the Convention. Respecting the confidentiality of health data is a vital principle in the legal systems of all the Contracting Parties to the Convention. It is crucial not only to respect the sense of privacy of a patient but also to preserve confidence in the medical profession and in the health services in general […].
The Court found that the applicable Latvian law did not limit in any way the scope of private data that could be collected by the MADEKKI: the authority processed data concerning a period of seven years, and originating from three different institutions. The relevance and sufficiency of the reasons for collecting information not directly related to the procedures carried out at the hospital in 1997 has not been examined at any stage of the domestic procedure. The MADEKKI has collected the applicant’s medical data indiscriminately, without any prior assessment of whether the data processed would be relevant.

Finally, the Court found that the applicable Latvian law was not formulated with sufficient precision and afforded no adequate legal protection against arbitrariness. Neither did it indicate with sufficient clarity the scope of discretion conferred on the competent authorities and the manner of its exercise. The interference with the applicant’s right to respect for her private life was not in accordance with the law within the meaning of Article 8 § 2 of the Convention. Consequently there has been a violation of Article 8.

Monday, April 28, 2014

ECtHR Case-Law Summaries (Hungarian)

You can find many of my case summaries in the subsequent issues of the Hungarian Human Rights Quaterly "Fundamentum." The language is Hungarian but I linked those cases where there is an Enlgish summary already published on this blog.

2013/2.: Röman v. Finland.