Privacy of Genetic Information: Medical Advance versus Personal Autonomy

2021 ◽  
pp. 1-6
Author(s):  
Robert I Field
Keyword(s):  
Genetic Information ◽  
Personal Autonomy ◽  
Medical Advance

Ethical, Legal, and Counseling Challenges Surrounding the Return of Genetic Results in Oncology

2013 ◽  
Vol 31 (15) ◽  
pp. 1842-1848 ◽  
Author(s):  
Martijn P. Lolkema ◽  
Christa G. Gadellaa-van Hooijdonk ◽  
Annelien L. Bredenoord ◽  
Peter Kapitein ◽  
Nancy Roach ◽  
...  
Keyword(s):  
Anticancer Agents ◽  
Genetic Information ◽  
Large Scale ◽  
Personal Autonomy ◽  
Cancer Genetics ◽  
Legal Framework ◽  
Hereditary Disease ◽  
Patients With Cancer ◽  
Next Generation Sequencing Ngs ◽  
Genetic Results

In the last decade, an overwhelming number of genetic aberrations have been discovered and linked to the development of treatment for cancer. With the rapid advancement of next-generation sequencing (NGS) techniques, it is expected that large-scale DNA analyses will increasingly be used to select patients for treatment with specific anticancer agents. Personalizing cancer treatment has many advantages, but sequencing germline DNA as reference material for interpreting cancer genetics may have consequences that extend beyond providing cancer care for an individual patient. In sequencing germline DNA, mutations may be encountered that are associated with increased susceptibility not only to hereditary cancer syndromes but also to other diseases; in those cases, disclosing germline data could be clinically relevant and even lifesaving. In the context of personal autonomy, it is necessary to develop an ethical and legal framework for how to deal with identified hereditary disease susceptibilities and how to return the data to patients and their families. Because clear legislation is lacking, we need to establish guidelines on disclosure of genetic information and, in the process, we need to balance privacy issues with the potential advantages and drawbacks of sharing genetic data with patients and their relatives. Importantly, a strong partnership with patients is critical for understanding how to maximize the translation of genetic information for the benefit of patients with cancer. This review discusses the ethical, legal, and counseling issues surrounding disclosure of genetic information generated by NGS to patients with cancer and their relatives. We also provide a framework for returning these genetic results by proposing a design for a qualified disclosure policy.

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.

New Rules Address Use of Genetic Information

2009 ◽  
Vol 42 (19) ◽  
pp. 11
Author(s):  
MARY ELLEN SCHNEIDER
Keyword(s):  
Genetic Information

Symmetry and Properties of Genetic Information Recording in DNA

2011 ◽  
Vol 43 (6) ◽  
pp. 40-48 ◽  
Author(s):  
Nikita A. Gupal ◽  
Anatoliy M. Gupal ◽  
Alexey V. Ostrovskiy
Keyword(s):  
Genetic Information ◽  
Information Recording

Our Bodies, Whose Property?

2013 ◽  
Author(s):  
Anne Phillips
Keyword(s):  
Labor Markets ◽  
Personal Autonomy ◽  
The Body ◽  
Body Parts ◽  
Complex Issue ◽  
Human Organs ◽  
Property Owners ◽  
The Common ◽  
The Difference ◽  
The Right

No one wants to be treated like an object, regarded as an item of property, or put up for sale. Yet many people frame personal autonomy in terms of self-ownership, representing themselves as property owners with the right to do as they wish with their bodies. Others do not use the language of property, but are similarly insistent on the rights of free individuals to decide for themselves whether to engage in commercial transactions for sex, reproduction, or organ sales. Drawing on analyses of rape, surrogacy, and markets in human organs, this book challenges notions of freedom based on ownership of our bodies and argues against the normalization of markets in bodily services and parts. The book explores the risks associated with metaphors of property and the reasons why the commodification of the body remains problematic. The book asks what is wrong with thinking of oneself as the owner of one's body? What is wrong with making our bodies available for rent or sale? What, if anything, is the difference between markets in sex, reproduction, or human body parts, and the other markets we commonly applaud? The book contends that body markets occupy the outer edges of a continuum that is, in some way, a feature of all labor markets. But it also emphasizes that we all have bodies, and considers the implications of this otherwise banal fact for equality. Bodies remind us of shared vulnerability, alerting us to the common experience of living as embodied beings in the same world. Examining the complex issue of body exceptionalism, the book demonstrates that treating the body as property makes human equality harder to comprehend.

Utopias of One

2019 ◽  
Author(s):  
Joshua Kotin
Keyword(s):  
United States ◽  
Soviet Union ◽  
World War I ◽  
Large Scale ◽  
Jim Crow ◽  
Personal Autonomy ◽  
The United States ◽  
Soviet Period ◽  
Original Research ◽  
The Soviet Union

This book is a new account of utopian writing. It examines how eight writers—Henry David Thoreau, W. E. B. Du Bois, Osip and Nadezhda Mandel'shtam, Anna Akhmatova, Wallace Stevens, Ezra Pound, and J. H. Prynne—construct utopias of one within and against modernity's two large-scale attempts to harmonize individual and collective interests: liberalism and communism. The book begins in the United States between the buildup to the Civil War and the end of Jim Crow; continues in the Soviet Union between Stalinism and the late Soviet period; and concludes in England and the United States between World War I and the end of the Cold War. In this way it captures how writers from disparate geopolitical contexts resist state and normative power to construct perfect worlds—for themselves alone. The book contributes to debates about literature and politics, presenting innovative arguments about aesthetic difficulty, personal autonomy, and complicity and dissent. It models a new approach to transnational and comparative scholarship, combining original research in English and Russian to illuminate more than a century and a half of literary and political history.

Does a Ribosome Really Read? On the Cognitive Roots and Heuristic Value of Linguistic Metaphors in Molecular Genetics. Part 2

2020 ◽  
Vol 63 (2) ◽  
pp. 46-62
Author(s):  
Suren T. Zolyan
Keyword(s):  
Information Processing ◽  
Genetic Information ◽  
Formal Organization ◽  
Dual Nature ◽  
Reading Frame ◽  
The Core ◽  
Genetic Information Processing ◽  
Cognitive Frame ◽  
Effective Instrument

We discuss the role of linguistic metaphors as a cognitive frame for the understanding of genetic information processing. The essential similarity between language and genetic information processing has been recognized since the very beginning, and many prominent scholars have noted the possibility of considering genes and genomes as texts or languages. Most of the core terms in molecular biology are based on linguistic metaphors. The processing of genetic information is understood as some operations on text – writing, reading and editing and their specification (encoding/decoding, proofreading, transcription, translation, reading frame). The concept of gene reading can be traced from the archaic idea of the equation of Life and Nature with the Book. Thus, the genetics itself can be metaphorically represented as some operations on text (deciphering, understanding, code-breaking, transcribing, editing, etc.), which are performed by scientists. At the same time linguistic metaphors portrayed gene entities also as having the ability of reading. In the case of such “bio-reading” some essential features similar to the processes of human reading can be revealed: this is an ability to identify the biochemical sequences based on their function in an abstract system and distinguish between type and its contextual tokens of the same type. Metaphors seem to be an effective instrument for representation, as they make possible a two-dimensional description: biochemical by its experimental empirical results and textual based on the cognitive models of comprehension. In addition to their heuristic value, linguistic metaphors are based on the essential characteristics of genetic information derived from its dual nature: biochemical by its substance, textual (or quasi-textual) by its formal organization. It can be concluded that linguistic metaphors denoting biochemical objects and processes seem to be a method of description and explanation of these heterogeneous properties.

PrimPol (Primase/Polymerase), replicating enzyme – A mini review

2020 ◽  
Vol 2 (4) ◽  
pp. 89-92
Author(s):  
Muhammad Amir ◽  
Sabeera Afzal ◽  
Alia Ishaq
Keyword(s):  
Dna Replication ◽  
Dna Polymerase ◽  
Genetic Information ◽  
Nuclear Dna ◽  
De Novo ◽  
Dna Polymerases ◽  
Test Site ◽  
Mitochondrial Dna Replication ◽  
Dna Template ◽  
Preliminary Phase

Polymerases were revealed first in 1970s. Most important to the modest perception the enzyme responsible for nuclear DNA replication that was pol , for DNA repair pol and for mitochondrial DNA replication pol  DNA construction and renovation done by DNA polymerases, so directing both the constancy and discrepancy of genetic information. Replication of genome initiate with DNA template-dependent fusion of small primers of RNA. This preliminary phase in replication of DNA demarcated as de novo primer synthesis which is catalyzed by specified polymerases known as primases. Sixteen diverse DNA-synthesizing enzymes about human perspective are devoted to replication, reparation, mutilation lenience, and inconsistency of nuclear DNA. But in dissimilarity, merely one DNA polymerase has been called in mitochondria. It has been suggest that PrimPol is extremely acting the roles by re-priming DNA replication in mitochondria to permit an effective and appropriate way replication to be accomplished. Investigations from a numeral of test site have significantly amplified our appreciative of the role, recruitment and regulation of the enzyme during DNA replication. Though, we are simply just start to increase in value the versatile roles that play PrimPol in eukaryote.

Sign in / Sign up

Export Citation Format

Share Document