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.

The Right Not to Know and the Duty to Tell: The Case of Relatives

2014 ◽  
Vol 42 (1) ◽  
pp. 38-52 ◽  
Author(s):  
Niklas Juth
Keyword(s):  
Genetic Testing ◽  
Genetic Predisposition ◽  
Genetic Information ◽  
Preventive Measures ◽  
Right To Know ◽  
Potential Conflict ◽  
Conflict Of Interests ◽  
Right Not To Know ◽  
The Right ◽  
Future Plans

This text is about obtaining and sharing genetic information when there is a potential conflict of interests between patients and their families and relatives. The patient or, in this text, the “index-person,” is someone who is considering obtaining or already has obtained genetic information about herself through genetic testing.The index-person can have several reasons to take an interest in obtaining her genetic information. She may want to know if she has a genetic predisposition for a disorder in order to take measures for preventing its development. Even if there are no preventive measures, as is the case with Huntington's disease, for instance, she may still want to know whether she has the mutation, in order to adjust her future plans. These interests that an individual may have in obtaining genetic information have been used to argue in favour of a right to know.

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 The right not to know and the obligation to know

2020 ◽  
Vol 46 (5) ◽  
pp. 300-303 ◽  
Author(s):  
Ben Davies
Keyword(s):  
Healthcare System ◽  
Relevant Information ◽  
Medical Professionals ◽  
Publicly Funded ◽  
Institutional Level ◽  
Right Not To Know ◽  
The Right

There is significant controversy over whether patients have a ‘right not to know’ information relevant to their health. Some arguments for limiting such a right appeal to potential burdens on others that a patient’s avoidable ignorance might generate. This paper develops this argument by extending it to cases where refusal of relevant information may generate greater demands on a publicly funded healthcare system. In such cases, patients may have an ‘obligation to know’. However, we cannot infer from the fact that a patient has an obligation to know that she does not also have a right not to know. The right not to know is held against medical professionals at a formal institutional level. We have reason to protect patients’ control over the information that they receive, even if in individual instances patients exercise this control in ways that violate obligations.

scholarly journals Challenges to effective and autonomous genetic testing and counseling for ethno-cultural minorities: a qualitative study

2020 ◽  
Vol 21 (1) ◽  
Author(s):  
Nehama Cohen-Kfir ◽  
Miriam Ethel Bentwich ◽  
Andrew Kent ◽  
Nomy Dickman ◽  
Mary Tanus ◽  
...  
Keyword(s):  
Genetic Counseling ◽  
Genetic Testing ◽  
Personal Autonomy ◽  
Minority Group ◽  
Minority Population ◽  
Minority Ethnic Group ◽  
Cultural Group ◽  
Childbearing Age ◽  
Arab Population ◽  
Testing And Counseling

Abstract Background The Arab population in Israel is a minority ethnic group with its own distinct cultural subgroups. Minority populations are known to underutilize genetic tests and counseling services, thereby undermining the effectiveness of these services among such populations. However, the general and culture-specific reasons for this underutilization are not well defined. Moreover, Arab populations and their key cultural-religious subsets (Muslims, Christians, and Druze) do not reside exclusively in Israel, but are rather found as a minority group in many European and North American countries. Therefore, focusing on the Arab population in Israel allows for the examination of attitudes regarding genetic testing and counseling among this globally important ethnic minority population. Methods We used a qualitative research method, employing individual interviews with 18 women of childbearing age from three religious subgroups (i.e., Druze, Muslim, and Christian) who reside in the Acre district, along with focus group discussions with healthcare providers (HCPs; 9 nurses and 7 genetic counselors) working in the same geographical district. Results A general lack of knowledge regarding the goals and practice of genetic counseling resulting in negative preconceptions of genetic testing was identified amongst all counselees. Counselors’ objective of respecting patient autonomy in decision-making, together with counselees’ misunderstanding of genetic risk data, caused uncertainty, frustration, and distrust. In addition, certain interesting variations were found between the different religious subgroups regarding their attitudes to genetic counseling. Conclusions The study highlights the miscommunications between HCPs, particularly counselors from the majority ethno-cultural group, and counselees from a minority ethno-cultural group. The need for nuanced understanding of the complex perspectives of minority ethno-cultural groups is also emphasized. Such an understanding may enhance the effectiveness of genetic testing and counseling among the Arab minority group while also genuinely empowering the personal autonomy of counselees from this minority group in Israel and other countries.

scholarly journals The Right to Know and the Right Not to Know Revisited: Part One

2017 ◽  
Vol 9 (1-2) ◽  
pp. 3-18 ◽  
Author(s):  
Roger Brownsword ◽  
Jeff Wale
Keyword(s):  
Genetic Information ◽  
Human Genetics ◽  
Prenatal Testing ◽  
Test Cases ◽  
Right To Know ◽  
Non Invasive ◽  
The Right To Know ◽  
Right Not To Know ◽  
The Uk ◽  
The Right

Abstract Prompted by developments in human genetics, a recurrent bioethical question concerns a person’s ‘right to know’ and ‘right not to know’ about genetic information held that is intrinsically related to or linked to them. In this paper, we will revisit the claimed rights in relation to two particular test cases. One concerns the rights of the 500,000 participants in UK Biobank (UKB) whose biosamples, already having been genotyped, will now be exome sequenced, and the other concerns the rights of pregnant women (and their children) who undergo non-invasive prenatal testing (NIPT)—a simple blood test that can reveal genetic information about both a foetus and its mother. This two-part paper is in four principal sections. First, we sketch the relevant features of our two test cases. Secondly, we consider the significance of recent legal jurisprudence in the UK and Singapore. Thirdly, we consider how, the jurisprudence apart, the claimed rights might be grounded. Fourthly, we consider the limits on the rights. We conclude with some short remarks about the kind of genetically aware society that we might want to be and how far there is still an opportunity meaningfully to debate the claimed rights.

Recognizing the Right Not to Know: Conceptual, Professional, and Legal Implications

2014 ◽  
Vol 42 (1) ◽  
pp. 53-63 ◽  
Author(s):  
Graeme Laurie
Keyword(s):  
Personal Autonomy ◽  
International Health ◽  
Health Care Ethics ◽  
Health Law ◽  
Legal Implications ◽  
Genetic Examination ◽  
Right Not To Know ◽  
The Right ◽  
Self Authorship ◽  
Sustained Increase

The right not to know is a contested matter. This can be because the inversion of the normal framing of entitlement to information about one's own health is thought to be illogical and inconsistent with self-authorship and/or because the very idea of claiming a right not to know information is an inappropriate appeal to the discourse of rights that places impossible responsibilities on others. Notwithstanding, there has been a sustained increase in this kind of appeal in recent years fueled in large part by the rise and rise of the importance of personal autonomy in health care ethics, and by domestic and international health law. The right not to know has been acknowledged in at least two important international legal instruments. For example, the UNESCO Universal Declaration on the Human Genome and Human Rights (1997), Article 5c provides: “The right of every individual to decide whether or not to be informed of the results of genetic examination and the resulting consequences should be respected.”

The Impact of Genetic Testing and Genetic Information on Ethical, Legal and Social Issues in North America

2013 ◽  
pp. 1317-1333
Author(s):  
Natalia Serenko
Keyword(s):  
Genetic Testing ◽  
North America ◽  
Information And Communication Technologies ◽  
Genetic Information ◽  
Social Issues ◽  
Psychological Impact ◽  
Communication Technologies ◽  
Individual Autonomy ◽  
Information And Communication ◽  
The Impact

This chapter discusses the impact of genetic testing and genetic information. It proposes a framework that facilitates a critical analysis of the ethical, legal, and social issues of genetic testing. The ethical effects include privacy infringement, genetic discrimination, misleading advertisement, psychological impact, and individual autonomy. The legal impacts embrace consistent terminology, referral guidelines, patent wars, and new legislations. The social effects pertain to inequality, higher insurance fees, tax burden, and fear of new eugenics. Information and communication technologies dramatically augment the effect of genetic testing on these outcomes. This chapter argues that information and communication technologies and rapid advances in genetics challenge the existing legislation systems in North America. Therefore, policy-makers need to address the tension between the potential benefits and harms of genetic testing and genetic information.

Genetic Counseling in the Genomic Era

2019 ◽  
pp. 187-200
Author(s):  
Barbara B. Biesecker ◽  
Kathryn F. Peters ◽  
Robert Resta
Keyword(s):  
Genetic Counseling ◽  
Genetic Testing ◽  
Genome Sequencing ◽  
Genetic Information ◽  
Genetic Counselors ◽  
Counseling Skills ◽  
Test Results ◽  
Genetic Test Results ◽  
The Face

The nature and scope of genetic counseling is continuing to evolve in the face of the expanding application of new genetic testing technologies like exome and genome sequencing. This creates a new set of challenges for determining the role of genetic counselors and genetic counseling in the delivery of genetic services. Genetic counselors may shift from being gatekeepers to genetic testing to interpreters of complex genetic test results. While this may require learning new biomedical information, the application of basic counseling skills will continue to be critical to service delivery. While testing has become more sophisticated and complex, it still comes down to families and patients trying to integrate genetic information into their lives in meaningful ways. This has, on one level, not changed for at least the last half-century.

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