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Ar asmuo turi teisę į genų redagavimą embriono stadijoje?
Miglinaitė, Eglė |
Norint atsakyti į klausimą ar asmuo turi teisę į genų redagavimą embriono stadijoje, pirmiausia darbe yra nagrinėjami žmogaus teisių aspektai genų redagavimo kontekste. Išsiaiškinama, kad genų redagavimas embriono stadijoje ligų gydymo tikslais gali įgyvendinti asmens teises į gyvybę, orumą bei tėvų interesą susilaukti sveiko vaiko. Kalbant apie teisę nebūti kankinamam, atsakymas yra dvejopas. Ši žmogaus teisė gali būti pažeista tiek naudojant genų redagavimą, tiek ir jį uždraudus. Darbe išsiaiškinama, jog genų redagavimas asmens gebėjimų gerinimo tikslais pažeidžia žmogaus teises bei pamatinius teisės principus. Antrojoje dalyje yra nagrinėjami paciento teisių aspektai. Išsiaiškinama, kad genų redagavimas gali įgyvendinti asmens teisę į sveikatos priežiūrą, nes embrionui turi būti užtikrinama galimybė būti sveikam, o kadangi gydymas genų redagavimo būdu efektyviausias būtų jį atliekant kuo ankstesnėje žmogaus vystymosi stadijoje, todėl panaikinus gresiančias ligas dar embriono stadijoje, asmens vėliau nereikėtų gydyti dėl šių ligų. Informuoto paciento sutikimą, be kurio negali būti teikiamos sveikatos priežiūros paslaugos, šiuo atveju duotų embriono atstovai – būsimi tėvai. Nors tėvai sprendimą turi priimti veikdami embriono geriausiais interesais, tačiau iškyla klausimas dėl tinkamo autonomijos principo įgyvendinimo. Trečiojoje dalyje nagrinėjamas visuomenės interesas ir jo balansas su asmens interesu. Išsiaiškinama, kad genų redagavimas ligų gydymo tikslais gali įgyvendinti asmens ir visuomenės interesus. Technologija dėl savo paprastumo, pigumo ir greitumo galėtų būti naudojama masinei ligų prevencijai, dėl ko visuomenėje būtų daugiau sveikų žmonių ir valstybei reikėtų skirti mažiau lėšų sergančiųjų gydymui ir kitokiai paramai, dėl ko valstybei būtų naudinga netgi įpareigoti asmenis naudoti genų redagavimą. Šioje vietoje susikerta asmens ir visuomenės interesai, remiantis LR Konstitucinio teismo suformuota praktika, darytina išvada, jog visuomenės interesas turi viršenybę ir asmens teisės šiuo atveju galėtų būti apribotos. Tačiau, reikšmingas ir teisėtas tikslas demokratinėje visuomenėje, ko gero, negalėtų būti pasiektas pažeidžiant vieną svarbiausių bioetikos principų – autonomijos principą. Todėl valstybė, siekdama visuomenės gerovės ir interesų balanso, turėtų skatinti ir finansuoti tokį technologijos naudojimo būdą, neįpareigojant asmenų jo naudoti.
Gene editing is an innovative and promising technology that can cure genetic diseases at the embryo stage. Although this method was developed specifically for the purpose of treating diseases, the possibilities for its application are much higher - it can replace practically any desired gene - to create a "perfect" offspring. In the context of gene editing at the embryo stage, there are many different interests interlinked, the most important are the embryo, future parents and the public interests. Although genetic modification is not yet applicable in clinical practice, because of insufficiently explored benefits and risks, but every day new research is being carried out, and this technology is rapidly moving towards to clinical adaptation. To answer the question whether a person has a right to gene editing at the embryo stage, the human rights aspects in the context of the gene editing are considered first. It is found out that human rights are inherent and they occur not at the time of birth, but by nature, so the embryo has the right to life, as the other human rights. Gene editing at the embryo stage for the purpose of treating diseases can implement the person's right to life, dignity and parental interest in having a healthy child. As to the right not to be tortured, the answer is twofold. This human right can be violated either through genetic modification or by banning it. If genetic modification would be prohibited, person would suffer from genetic disease, and if gene editing would be allowed, the person could suffer from the unwanted consequences of the treatment. The work reveals that parents have an interest in controlling what kind of child they will have, but gene editing for the purpose of improving person's abilities can violate human right to dignity and freedom, the basic principles of law - equality and justice, and well-established norms of society's morality. The second part analyzes patient’s rights aspects in the context of gene editing. It is found that gene editing can implement the person's right to health care, because the embryo must be guaranteed the possibility of being healthy. By analyzing legislation, cases of European Court of Human Rights and scientific articles, it is found out that the embryo, as a prospective person and potentially prospective patient, is interested in being healthy and being treated. Since gene therapy will be most effective at the earliest stages of human development, so eliminating genetic diseases at an embryo stage, the person should not be treated later due to these diseases. The informed consent of the patient, without which healthcare can not be provided, in this case would be given by the embryo's representatives - future parents. Although parents have to make a decision in the best interests of the embryo, it raises the question of the proper implementation of the principle of autonomy, because parents would be familiar with risk and the consent for treatment would have been provided by them, but an unwanted outcome of the treatment would survive a child, who did not give his consent. The third part deals with the public interest and its balance with the interests of the individual. It is found out that genetic modification for the purpose of treating genetic diseases can implement the public interest. Because of its simplicity, low-cost and speed, technology could be used for massive prevention of diseases, which would result in more healthy people in the society, and the state would have to spend less money on treatment and other support for patients, which would make it even more useful for the state to oblige individuals to use gene editing for the treatment of diseases at the embryo stage. The interests of society and the individual are interspersed here, because such an obligation would violate the parents' right to private life and the principle of autonomy. On the basis of the practice developed by the Constitutional Court of the Republic of Lithuania, one can conclude that, in order to achieve the common good, the public interest prevails and the rights of a person may be limited in this case. But the state should promote and finance such a method of treatment for the sake of public welfare without obliging people to use it. Thus, gene editing at the embryo stage for the purpose of treating diseases can implement the interests of the embryo, future parents and the public. The use of this technology can implement the person's right to life and the right to dignity. Also, person's right to health care can be implemented by the use of genetic modification. It is important to mention that gene editing in order to improve personal capacities can violate human rights and the principles of law. As science progresses so rapidly, states must take a position on gene editing and adopt relevant legislation. Otherwise, the courts soon will have to deal with these issues and protect the interests of the embryo. The hypothesis that a person has a right to gene editing at the embryo stage for the purpose of treating diseases has partly proved. Person has a right to gene editing at the embryo stage for the purpose of treating diseases, as well as the right to refuse such treatment. However, as long as the state does not clearly regulate the application and funding mechanisms of this treatment method, the practical aspects of the implementation of this right and the distribution of legal responsibility remain the subject of future discussions and research.