scholarly journals A principled approach to bioethical regulation of genetic counseling: mapping the bioethical problems of genetic counseling and models for their solution

2021 ◽  
Vol 25 (1) ◽  
pp. 198-213
Author(s):  
Sergey Yu. Shevchenko ◽  
Ekaterina M. Shkomova
Keyword(s):  
Genetic Counseling ◽  
Potential Benefit ◽  
Family Members ◽  
Genetic Data ◽  
Two Dimensions ◽  
High Tech ◽  
Legal Problems ◽  
Right Not To Know ◽  
The Right

Genetic counseling is a field of high-tech medicine, and its development gives rise to many ethical and legal problems associated primarily with the specifics of genetic data. The purpose of this article is to map the problems of bioethical regulation in genetic counseling, as well as approaches to their solution. To structure the problem field, a principlist approach was chosen. Main results: It is shown that bioethical problems of genetic counseling arise not only in connection with adherence to separate bioethical principles, but also in connection with the conflict between the principles of autonomy and beneficence. It is proposed to distinguish two dimensions of this conflict: 1. Individual, associated primarily with the exercise by a person of the right not to know about his/her hereditary risks; 2. Family, associated with the contradiction between the observance of medical secrecy (as part of autonomy) and the potential benefit from informing the patient's relatives about their possible hereditary risks. Conclusions: The models for resolving bioethical collisions highlight new aspects of meaning of autonomy. In the context of genetic counseling, it is possible to understand autonomy not as non-interference, but as an opportunity to control the disposal of genetic data. At the same time, in the context of regulating this disposal, the autonomy of the patient's family members can also be taken into account.

The protection of genetic information

2010 ◽  
pp. 91-113
Author(s):  
Juri Monducci
Keyword(s):  
Genetic Information ◽  
Personal Data ◽  
Genetic Data ◽  
Case Law ◽  
Genetic Determinism ◽  
Genetic Identity ◽  
Statutory Protection ◽  
Right Not To Know ◽  
Genetic Makeup ◽  
The Right

The law pertaining to personal data has developed in Italy over a thirty-year span that took us from recognition of such data in the case law, in 1975, to its statutory protection, in 2003. This evolution would subsequently come to the point of specifically regulating the processing of genetic data as data revealing an individual's genetic makeup, thereby also revealing the biological future of individuals and their offspring: this information describes an individual at a core level where the deepest, most unchangeable traits are found and can therefore nurture what is nowadays referred to as genetic determinism, which reduces the person to a complex of genetic data and so ignores the whole layer of characteristics that make each of us unique. There is, then, a discriminatory risk inherent in the processing of genetic data, and equally clear are the psychological implications of such processing, so much so that the need has arisen to have rules in place aimed at regulating the biotechnologies and genetics in particular. These rules have given birth to the so-called fourthgeneration rights, inclusive of the right to ones genetic identity and the right not to know ones genetics (although this is something that had been discussed earlier, too), and it is to a discussion of these rights that this essay is devoted.

scholarly journals ¿Un deber de conocer para ser autónomos? Focalizando la atención en la autonomía personal en el derecho a no saber la información genética

2015 ◽  
Vol 64 (4) ◽  
Author(s):  
Yordanis Enríquez Canto
Keyword(s):  
Genetic Counseling ◽  
Genetic Testing ◽  
Genetic Information ◽  
Personal Autonomy ◽  
Relevant Information ◽  
Individual Autonomy ◽  
Genetic Condition ◽  
Bioethical Debate ◽  
Right Not To Know ◽  
The Right

En el debate bioético el desafío a la noción de autonomía personal, respecto al acceso a la información genética, se evidencia cuando se intenta dar sentido y proteger un interés en no saber. Tal debate se desarrolla en diversas áreas relacionadas con el uso de la información genética, sin embargo el presente trabajo se focaliza en el contexto de la asesoría genética. Una de las tesis centrales de este debate propone en primer lugar, que el derecho a no conocer la propia condición genética no aumenta el valor de la autonomía individual, sino que lo degrada y, segundo, que una ignorancia deseada respecto a los resultados de las pruebas genéticas es culpable. El artículo constituye una respuesta a las tesis de Rosamond Rhodes y Rodolfo Vázquez. En esta propuesta se realiza una argumentación que sigue un doble esquema. El primero incluye un razonamiento contra aquellos que hacen uso de su derecho a no saber, afirmando que no se puede ser autónomo en las decisiones sin saber toda la información pertinente. El segundo tiene en cuenta la decisión de no saber en relación a otros individuos: concluyendo que la ignorancia genética es irresponsable e incluso culpable. El objetivo del artículo es proponer, en su primera parte, algunas consideraciones críticas respecto a la díada: autonomía - necesidad de información; y en la segunda, realizar un análisis de la estrategia argumentativa que sostiene que la elección de no saber los resultados diagnósticos es una ignorancia incriminatoria. ---------- In the bioethical debate regarding access to genetic information, the challenge to the notion of personal autonomy is evident when attempting to make sense of and to protect a patient’s interest in not knowing. Such a debate takes place in various areas related to the use of genetic information, however the present work focuses on the context of genetic counseling. One of the main theses in this debate suggests first that the right not to know one’s genetic condition does not increase the value of individual autonomy, but rather degrades it and, second, that a desired ignorance of the results of genetic testing is guilty. The article is a response to the arguments of Rosamond Rhodes and Rodolfo Vázquez. The thesis proposes an argumentation that follows a double outline. The first includes an argument against those who exercise their right not to know, stating that one cannot make autonomous decisions without knowing all the relevant information. The second takes into account the decision of not knowing related to other individuals, concluding that a person who chooses genetic ignorance is irresponsible and even guilty. The purpose of the paper is to first suggest some critical considerations regarding the dyad need of information-autonomy, while secondly proposing an analysis of the theoretical framework that argues that the choice of not knowing the diagnostic results is an incriminating ignorance.

scholarly journals COVID-19 and the Human Rights of Nationals Abroad

AJIL Unbound ◽  
2020 ◽  
Vol 114 ◽  
pp. 317-321
Author(s):  
Guofu Liu
Keyword(s):  
Human Rights ◽  
Hate Speech ◽  
Family Members ◽  
Right To Health ◽  
Standard Of Living ◽  
Work Permit ◽  
Rights Protection ◽  
The Right

The COVID-19 pandemic is having serious and disproportionate effects on nationals abroad and their families globally. Many states have adopted positive measures including temporarily suspending forced returns as well providing visa and work permit extensions, temporary residence, or other forms of regular status to ensure that migrants are accounted for in national responses to the pandemic. Nevertheless, the human rights of nationals abroad and nationals with foreign family members have faced significant challenges. Some states have fully or partially closed entry to all of their own nationals and their foreign family members, in violation of nationals’ right to return and their right of family unification. Other states’ nationals abroad have been unable to enjoy the right to an adequate standard of living and the right to health. Many have also encountered the burdens of hate speech in both their home states and the states in which they live, the effect of which has been to undermine freedom of opinion and expression and the right to equality and non-discrimination. This essay identifies and explains these threats to human rights in the era of COVID-19. The essay encourages states to recommit to rights protection.

Ustawowe i umowne prawo pierwokupu przysługujące dzierżawcy nieruchomości rolnych – wybrane problemy prawne

2021 ◽  
pp. 375-394
Author(s):  
Aneta Suchoń
Keyword(s):  
Real Estate ◽  
Agricultural Land ◽  
Third Party ◽  
Agricultural System ◽  
Business Activity ◽  
Legal Regulations ◽  
Legal Problems ◽  
Agricultural Support ◽  
The Right ◽  
In The Beginning

The article aimed to determine whether the legal regulations in the field of the statutory and contractual pre-emption right of a tenant of agricultural real estate provide adequate protection to dependent owners in terms of the possibility of acquiring such land and conducting business activity on it. Secondly, the paper indicated legal problems related to statutory and contractual pre-emption right of a tenant of agricultural real estate and suggested how those problems could be handled. In the beginning, the considerations focused on the statutory pre-emption right for agricultural real estate. It referred to a subjective and objective scope of the right in question, and an attempt was made to determine whether the leased land can be sold to a third party due to the obligation to run a farm in person (only the sale contract allows for exercising the pre-emptive right). Failure to perform the indicated obligations might result in the case being referred to the court by the National Center for Agricultural Support. The second part of the article discussed the contractual pre-emption right for agricultural real estate. The author pointed out the possible concurrence of the statutory pre-emption right of the National Support Centre for Agriculture and the contractual pre-emption right of the lessee. The paper also referred to the problems related to implementing this right due to the requirements that the buyer must meet. In summary, the author, among other things, pointed out the fact that the importance of the statutory pre-emption right of the tenant of agricultural real estate had been diminishing over the years. The position of the lessee of agricultural land in terms of purchasing agricultural land is weakening. Currently, in practice, tenants may rarely use the pre-emption right. The author proposed the introduction of a provision to the Act on Shaping the Agricultural System on an additional consent of the National Support Centre for Agriculture for the sale of real estate under a lease.

Human rights of people with mental illness diagnosis: perceptions among service users, family members and health professionals in Tunisia

2021 ◽  
Vol ahead-of-print (ahead-of-print) ◽  
Author(s):  
Mayssa Rekhis ◽  
Sami Ouanes ◽  
Abir Ben Hamouda ◽  
Rym Rafrafi
Keyword(s):  
Mental Illness ◽  
Human Rights ◽  
Family Members ◽  
Mental Illnesses ◽  
Service Users ◽  
Content Type ◽  
People With Mental Illness ◽  
The Family ◽  
The Right ◽  
Main Factor

Purpose This study aims to assess the awareness about the rights of people with mental illness in the main psychiatric hospital in Tunisia among the service users, the family members and the staff. Design/methodology/approach The Convention of Rights of People with Disabilities mandates that State Parties initiate and maintain campaigns and human rights training to promote understanding of the rights of people with mental illnesses, considered as a main factor for their fulfillment. Service users, family members and staff evaluated, through a survey, the importance of ten rights for persons with mental illness, stated in the convention. Findings Disparities were found in the perception of the different rights by and between the three groups. The highest levels of awareness were associated with the freedom from torture or degrading treatment and the right to live with dignity and respect, whereas the lower importance were assigned to the right to participation in recovery plans, to give consent and to exercise legal capacity. Originality/value The lack of awareness and the poor perception of rights of people with mental illness is one of the barriers to their achievement. More training and awareness raising is necessary.

ON THE ISSUE OF FORECLOSURE ON A SINGLE RESIDENTIAL PREMISES UNDER A MORTGAGE AGREEMENT

2021 ◽  
Author(s):  
Татьяна Александровна Скворцова ◽  
Яна Валерьевна Кухмистрова
Keyword(s):  
Family Members ◽  
Legal Problems ◽  
Balance Of Interests

В статье рассматриваются правовые проблемы обращения взыскания на единственное жилое помещение по договору ипотеки. Проанализированы вопросы достижения баланса интересов кредитора и заемщика, а также защиты прав на жилище несовершеннолетних и недееспособных членов семьи заемщика. Сделан вывод о необходимости изменения положений законодательства об исполнительском иммунитете в отношении единственного жилого помещения. The article deals with the legal problems of foreclosure on a single residential premises under a mortgage agreement. The issues of achieving a balance of interests of the lender and the borrower, as well as the protection of the rights to housing of minors and incapacitated family members of the borrower are analyzed. It is concluded that it is necessary to change the provisions of the legislation on executive immunity in relation to a single residential premises.

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