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"HCE: THE DIGNITY OF THE PATIENT. A HUMAN RIGHTS-BASED APPROACH ".

Dear, best regards. I hope you like this work of my authorship presented at the Public Bar Association of Buenos Aires, Buenos Aires, Argentina, in 2015. Thanks for the space.The quotations are in the previous work in original Spanish. Sorry for the translation.

"HCE: THE DIGNITY OF THE PATIENT. A HUMAN RIGHTS-BASED APPROACH ".

 AUTHOR: Romina Florencia Cabrera. Lawyer graduated from the UNLP (Argentina). Researcher-Teacher at the UBA (Guest of the Specialization in Computer Law), and in the USAL (Master's in Science of Legislation). Member of the Ibero-American Observatory for Data Protection; Of the Institute of Constitutional and Political Law of the Faculty of Juridical and Social Sciences of the UNLP, and of other Scientific-Academic institutions. International Recognition of Dignified Jurist by the University of Trujillo, Peru. International Director of Computer Security. Director of the International Direction of International Security of police procedures and ASCASEPP (Association of Training of Public and Private Security, registered in the National Registry of Associations of the Ministry of the Interior, Madrid, Spain, under the Number 591967). Author of different publications, including "Legal science and social change: The role of Bar Associations in face of new challenges of professional practice", "The ethical dilemma of professional practice. Difficulties and challenges "," Social networks and the impact on daily life "," The Internet as a Human Right ", etc.

E-MAIL: romicabrera83@gmail.com

SUMMARY: Human Rights are based on the value and dignity of the human person. They establish Rights and protect freedoms of the community, consecrated such safeguards in the International Treaties, of universal conception. Man is born and dies free, obviously subject to rights and obligations in his civil life. But that autonomy of the will, makes him direct the acts of his own life (without their actions hurt a third), and chooses options in the way of their existence. Health is a right that every living being should enjoy; But the manner in which man, (possessor of liberty, capacity for discernment and will), can exercise that right, and demand that his decisions regarding his own body (or mind in some cases) be respected, conceives an amplitude Of the traditional conception on Medicine and Legal Relations.



INDEX


INTRODUCTION:

Society evolves, and in this way, civilization is strengthening ties with its environment, and for that reason, adapts to the changes that are transforming the era in which every human being has to live (As Heraclitus said, "no We bathe twice in the same river "); A time and a certain space. We are a light in eternity would say the wise ...
Law 26.529, known as "patient rights", lists as "essential patient rights in its relationship with health professionals, health insurance agents, and any other effector", autonomy of the patient. Will, information and access to clinical documentation, as well as, among others, the preservation of their privacy (Article 2). In general, the law recognizes rights that had been declared by jurisprudence, but did not appear to be expressly regulated, except for so-called "informed consent", required for organ ablation, but not for other surgical therapeutic practices.

The medical record is the document par excellence in the field of health care. Law 26,529 defines the medical record as "the obligatory chronological, folded and complete document in which records all actions taken to the patient by professionals and health aids (article 12) and incorporates the possibility of computerized medical history Was already being implemented in some establishments.) It is a requirement that all means be ensured to ensure the preservation of its integrity, authenticity, inalterability, durability and recoverability of the data contained therein in a timely manner. Accesses with identification keys, non-rewritable means of storage, control of modification of fields or any other suitable technique to ensure their integrity, delegating in the regulation to establish the supporting documentation that must be preserved and designate those responsible who will be in charge of the Guard of the same (article 13).

DEVELOPMENT:
HUMAN RIGHTS IN THE INTERNATIONAL COMMUNITY AND IN OUR CONSTITUTIONAL ORDERS

Human Rights are based on the value and dignity of the Human Person. This is established by the Vienna Convention. Our Country, receives the hierarchy of said Rights embodied in the International Treaties of Article 75, paragraph 22 of the Constitution.

The importance of the rights of patients as the basic axis of clinical-care relationships is evidenced by the interest shown by almost all international organizations with competence in this area. Since the end of the Second World War, organizations such as the United Nations, UNESCO or the World Health Organization, or, more recently, the European Union or the Council of Europe, among others, have launched declarations or, in some cases , Have enacted legal norms, on generic or specific aspects related to this issue. In this sense, it is necessary to mention the importance of the Universal Declaration of Human Rights (1948), which has been the obligatory reference point for all constitutional texts promulgated later or, in the strictest health area, the Declaration on the Promotion of The rights of patients in Europe, apart from multiple international declarations of greater or lesser scope and influence that have referred to these issues.
The Council of Europe Convention for the Protection of Human Rights and Human Dignity concerning the Applications of Biology and Medicine (Convention on Human Rights and Biomedicine, 1997, unlike previous declarations is the First international instrument of a binding legal nature for the countries that sign it. It establishes a common framework for the protection of human rights and human dignity in the application of biology and medicine. The need to recognize the rights of patients, including the right to information, informed consent and privacy of information relating to the health of people, pursuing a harmonization of legislation in these areas.
This Convention, when enumerating in its initial recitals the international norms related to its purposes, expressly refers to Convention 108/1981, on Personal Data Protection, which reveals the link between the right to information about the patient's health , The right of access to its history or clinical file, and the action of access or habeas informative information, when it is denied knowledge of it.

PRIVACY AND PROTECTION OF PERSONAL DATA.

Prior to the enactment of Law 26,529, Law 25.326, entitled "Personal Data Protection and Habeas Data Law", had not systematically contemplated neither the confidentiality nor the access routes to health data, and of course, that Nor was there a rule regulating the characteristics and contents of the medical record.
The international regulations that we have outlined and the law 25.326 establish the "sensitive" character, that is to say, deserving of a special or special treatment, of the health data of the people.
In particular, those diseases that, like AIDS or coexistence with HIV, have a serious discriminatory potential, should only be registered with encryption or encryption methods that restrict their access to the maximum extent possible by persons other than the person concerned or who are expressly authorized by written. Regrettably, even though this is expressly contemplated by Law 23.798 (Adla, LD, 3627) and its regulatory decree, it is notorious that it has not been complied with in many areas, and Law 25.326 has not helped to improve this situation .
As we pointed out on another occasion, art. 8th LPDP should have been more precise, taking into account the background of comparative law and even specific legislation regarding certain health data, such as the aforementioned law 23,798.
The European Directive 45/1996 establishes as a general principle that "... data that by their nature may violate fundamental freedoms or privacy should not be subject to any treatment, unless the interested party gave explicit consent "; And adds that "... exceptions to this prohibition should be explicitly stated for specific needs, in particular where the processing of said data is carried out for health-related purposes" by natural persons subject to a legal obligation to Professional secrecy, or for legitimate activities by certain associations or foundations whose purpose is to enable the exercise of fundamental freedoms.
However, it is acknowledged that when justified by "reasons of major public interest", States parties may derogate from the prohibition on dealing with sensitive categories of data in sectors such as public health and social protection, particularly in Quality and cost-effectiveness, as well as the procedures used to resolve claims for benefits and services under the sickness insurance scheme, scientific research and public statistics. But to do this, it is necessary to provide appropriate and specific guarantees for the protection of the fundamental rights and privacy of individuals.
The art. 8 of Directive 45/1996, concerning the "processing of special categories of data", expressly requires Member States to prohibit the processing of personal data revealing racial or ethnic origin, political opinions, religious or philosophical beliefs, Membership of trade unions, as well as the processing of data relating to health or sexuality. That is, universally known as "sensitive data". Similar provision has reproduced art. 7th Law 25,326 (Adla, LX-E, 5426).
We had also noticed that the difference between the Spanish Data Protection Act and ours was that the former contained a more detailed regulation on the treatment of health data, and a special law such as General Health 14/1986, Whose art. 10 recognized that all human beings have the right to respect for their personality, human dignity and privacy with respect to the different public health administrations, without being discriminated against on the basis of race, social, sex, moral, Economic, ideological, political or trade union; The information on the health services to which it can access and the requirements for its use; To the confidentiality of all information related to its process and to its stay in public and private health institutions that collaborate with the public system; To be warned if the prognostic, diagnostic and therapeutic procedures that are applied can be used according to a teaching or research project, which in no case may pose an additional danger to your health (in any case, prior authorization and Written consent of the patient and acceptance by the physician and the address of the corresponding health center); To be given in understandable terms to him and his relatives or relatives complete and continuous, verbal and written information about his process, including diagnosis, prognosis and treatment alternatives; To the free choice between the options presented by the respondent


NEW PARAMETERS BEFORE IMPENSED


Reality exposes us to new trends that in a more traditional world (with respect to the word), would be unlikely to legislate and receive the guarantee of legal security provided by the National Constitution, the Basic Law, such as Equal Marriage, Fertility Crusade, Adoption of same-sex couples, Direct Democracy through Social Networks, Citizenship 3.0, Euthanasia, and a topic of Bioethics that particularly attracted my attention, when my father Héctor Cabrera, also lawyer and Professor (and of Greek origin Family, to perhaps base our interest in Science), showed me with curiosity a news about the first head implant, to be made in 2017. The 30-year-old Russian programmer Valeri Spriridónov, who suffers from spinal muscular atrophy, Has become the first candidate to undergo a head transplant. While the announcement has caused controversy and mistrust in the medical community, Italian surgeon Sergio Canavero, who is preparing to carry out this unprecedented operation, says the operation is viable. The first potential patient to undergo a head transplant is communicated via Skype with Italian surgeon Sergio Canavero, who will carry out the operation. According to him, those suffering from spinal muscular atrophy have priority in the selection of patients for this type of operation.
Spiridonov contacted the professor two years ago after learning about his research on the Internet. The programmer's family supports his decision, although they are aware of the high risk of death after surgery. "What if I'm scared? Yes. But also interest," says the programmer of the Russian city of Vladimir. "This experiment is a great [scientific] development, it is equivalent to Gagarin's flight." Objectively, I do not have the material resources to pay for it, but I am willing to surrender to science, "says Spiridonov.
This will lead to ethical, religious, and philosophical debates, not just scientific ones: it also opens the door to the Cryogenic controversy.
I do not say that these questions are good or bad, I am by no means granting a moral qualification; I am not who to judge anyone ... I only humbly pretend to seek solutions and legal answers to the problems that will soon be invading us ... or not ... maybe some remain in the fantasy ....
In the Digital Age, with the Incorporation of Information and Communication Technologies, the clinical history tends to be digitized. Therefore, you will experience the phenomena of digital media instead of paper support; The digital signature and the big data. Therefore, all necessary precautions must be taken to ensure that this information has the corresponding computer security, and that all agents involved in the care and registration of the files containing the Digital Clinical History, comply with the provisions established by the laws Local and international standards, with due diligence and ethics. The Digital Age involves a number of legal, social, educational, cultural, political and all kinds of relationships previously unthinkable ... all immersed in the world of so-called Social Networks, where inadequate data can undermine the civil rights conquered by a person , Or in the case of a third party. The online reputation, today, is more important when it comes to, for example, getting a job, than the same cv or personal interview (I do not entirely agree with it, but that is going to do. . It is reality and must be accepted and adapted to it in the best possible way). It can also increase discriminatory practices of certain groups against others, whether ethnic, social, religious, etc., for a leak of information, ill-treated and unguarded.

CONCLUSIONS:
The patient should be treated as a person, with dignity and value of the human person, and not as a thing, without emotions or decision-making capacity. Your opinion must be valued first of all, whether technically valid or not, and only carry out treatments or interventions with your consent (with due process of communication of information); And before an emergency, with the authorization of a relative or a close person, and only if these social actors were not found, take actions only to save the life of the patient.
Legislative provisions and constitutional guarantees, and above all, international human rights treaties, which have a constitutional hierarchy, must be respected. In the Digital Age, with the incorporation of Information and Communication Technologies, the clinical history tends to be digitized: therefore, the necessary precautions must be taken in terms of computer security, to avoid incidents of computer vulnerability, which put In danger the sensitive information of the patient, object that exceeds this work.

FINAL REFLECTIONS:

Life and death are eternal complex themes. Each society and person elaborates them as it can and wants ... There is respect for religious and philosophical beliefs; Tolerance and respect for the opinions of others is fundamental for a truly free, democratic coexistence that tends towards the common good. That is why every individual, unique and unrepeatable in this world, must make the decisions he prefers regarding his health; To his quality of life and to the end of his life, if his suffering overwhelms him (according to his religious beliefs or not, and to his conscience) ... hearing of course medical advice from experts that positively orient him to his improvement. These issues should be worked on in a more integrated way: patient-physician-family and social environment; So that, with due dialogue and understanding among all social actors, a more just, balanced, equitable, free society with real (real) structural equality can be achieved, where respect for democratic conceptions established by human rights defenders By the International Community, are truly respected and promoted. Not only as legal rules to follow ... but as social and ethical practices.

BIBLIOGRAPHY:
CAHN, P., BLOCH, C. and WELLER, S., "AIDS in Argentina: Epidemiology, Subjectivity and Social Ethics", 1999, Ed. Arkhetypo
MAGLIO, Ignacio, "Guidelines for Good Ethical Legal Practice in HIV-AIDS.", August 2001, Ed. Arkhetypo, pp. 83/84.


MOLINA QUIROGA, Eduardo. "Right to health information and habeas specific date. Essential Rights of the Patient ". LA LAY 26/08/2013 ..
MOLINA QUIROGA, Eduardo, Health data in the law 25.326 of Protection of Personal Data, SJA 28/4/2004.

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