Regulating Genetic Information—Exploring the Options in Legal Theory

2014 ◽  
Vol 21 (5) ◽  
pp. 425-453 ◽  
Author(s):  
Aisling de Paor
Keyword(s):  
Genetic Information ◽  
Genetic Basis ◽  
Legal Theory ◽  
Personalised Medicine ◽  
Theoretical Perspective ◽  
Genetic Technology ◽  
Regulatory Frameworks ◽  
Technological Advances ◽  
Genetic Technologies ◽  
Genetic Science

Ground-breaking genetic discoveries and technological advances have introduced a new world of genetic exploration, and technological advances have facilitated the discovery of the genetic basis of a myriad of diseases. Genetic testing promises to potentially revolutionise health care and offer the potential of personalised medicine. Genetic technology may also offer the means to detect potential future disabilities. In light of rapid advances in genetic science and technology, questions arise as to whether an appropriate framework exists to protect the interests of individuals, prevent the misuse of genetic information by interested third parties, and also to encourage further advances in genetic science. In consideration of rapidly advancing genetic technologies and the ethical and legal concerns that arise, this article examines the regulation of genetic information, primarily from a theoretical perspective. It explores the preferable mode of regulation and choice of regulatory frameworks in legal theory, including non-discrimination, privacy and property.

scholarly journals The genomics of adaptation

2012 ◽  
Vol 279 (1749) ◽  
pp. 5024-5028 ◽  
Author(s):  
Jacek Radwan ◽  
Wiesław Babik
Keyword(s):  
Genetic Variation ◽  
Natural Selection ◽  
Royal Society ◽  
Genetic Basis ◽  
Genomic Data ◽  
Evolutionary Change ◽  
Introductory Article ◽  
Technological Advances ◽  
A Genome ◽  
Genome Level

The amount and nature of genetic variation available to natural selection affect the rate, course and outcome of evolution. Consequently, the study of the genetic basis of adaptive evolutionary change has occupied biologists for decades, but progress has been hampered by the lack of resolution and the absence of a genome-level perspective. Technological advances in recent years should now allow us to answer many long-standing questions about the nature of adaptation. The data gathered so far are beginning to challenge some widespread views of the way in which natural selection operates at the genomic level. Papers in this Special Feature of Proceedings of the Royal Society B illustrate various aspects of the broad field of adaptation genomics. This introductory article sets up a context and, on the basis of a few selected examples, discusses how genomic data can advance our understanding of the process of adaptation.

Laboratory Specimens and Genetic Privacy: Evolution of Legal Theory

2013 ◽  
Vol 41 (S1) ◽  
pp. 65-68 ◽  
Author(s):  
Michelle Huckaby Lewis
Keyword(s):  
Biomedical Research ◽  
Biological Samples ◽  
Biological Tissue ◽  
Genetic Information ◽  
Legal Theory ◽  
Genetic Privacy ◽  
Tissue Samples

Human biological tissue samples are an invaluable resource for biomedical research designed to find causes of diseases and their treatments. Controversy has arisen, however, when research has been conducted with laboratory specimens either without the consent of the source of the specimen or when the research conducted with the specimen has expanded beyond the scope of the original consent agreement. Moreover, disputes have arisen regarding which party, the researcher or the source of the specimen, has control over who may use the specimens and for what purposes. The purposes of this article are: (1) to summarize the most important litigation regarding the use of laboratory specimens, and (2) to demonstrate how legal theory regarding control of laboratory specimens has evolved from arguments based upon property interests in biological samples to claims that the origins of laboratory specimens have privacy interests in their genetic information that should be protected.

scholarly journals Genetic Ancestry Testing among White Nationalists

2017 ◽  
Author(s):  
Aaron Panofsky ◽  
Joan Donovan
Keyword(s):  
Qualitative Analysis ◽  
Genetic Basis ◽  
Online Discussions ◽  
Genetic Ancestry ◽  
European Ancestry ◽  
Genetic Knowledge ◽  
Data Set ◽  
Genetic Science ◽  
White Nationalism ◽  
Interpretive Framework

Using a data set drawn from the website Stormfront, this paper presents a qualitative analysis of online discussions of white nationalist individuals’ genetic ancestry test (GAT) results. Seeking genetic confirmation of personal identities and having a strong ideology of the genetic basis of race and the value of white “purity,” white nationalists using GATs are sometimes confronted with information they consider evidence of non-white or non-European ancestry. Despite their essentialist views of race, Stormfront posters use GAT information to police individuals’ membership far less commonly than working to develop a variety of scientific and anti-scientific responses enabling them to repair identities by rejecting or reinterpreting GAT results. Simultaneously, however, Stormfront posters use the particular relationships made visible by GATs to debate the collective boundaries and constitution of white nationalism. Bricoleurs with genetic knowledge, white nationalists use a “racial realist” interpretive framework that departs from canons of genetic science but cannot be dismissed simply as ignorant.

scholarly journals Cardiomyopathy Classification: Ongoing Debate in the Genomics Era

2012 ◽  
Vol 2012 ◽  
pp. 1-10 ◽  
Author(s):  
Charles McCartan ◽  
Robert Mason ◽  
S. R. Jayasinghe ◽  
Lyn R. Griffiths
Keyword(s):  
Adverse Effects ◽  
Genetic Information ◽  
Molecular Basis ◽  
Genetic Basis ◽  
Muscle Size ◽  
Systemic Diseases ◽  
Ongoing Debate ◽  
Traditional Classification ◽  
And Function

Cardiomyopathies represent a group of diseases of the myocardium of the heart and include diseases both primarily of the cardiac muscle and systemic diseases leading to adverse effects on the heart muscle size, shape, and function. Traditionally cardiomyopathies were defined according to phenotypical appearance. Now, as our understanding of the pathophysiology of the different entities classified under each of the different phenotypes improves and our knowledge of the molecular and genetic basis for these entities progresses, the traditional classifications seem oversimplistic and do not reflect current understanding of this myriad of diseases and disease processes. Although our knowledge of the exact basis of many of the disease processes of cardiomyopathies is still in its infancy, it is important to have a classification system that has the ability to incorporate the coming tide of molecular and genetic information. This paper discusses how the traditional classification of cardiomyopathies based on morphology has evolved due to rapid advances in our understanding of the genetic and molecular basis for many of these clinical entities.

scholarly journals The “Virtual Digital Twins” Concept in Precision Nutrition

2020 ◽  
Vol 11 (6) ◽  
pp. 1405-1413 ◽  
Author(s):  
Kalliopi Gkouskou ◽  
Ioannis Vlastos ◽  
Petros Karkalousos ◽  
Dimitrios Chaniotis ◽  
Despina Sanoudou ◽  
...  
Keyword(s):  
Genetic Information ◽  
Healthy Aging ◽  
Health Data ◽  
Lifestyle Changes ◽  
Dietary Interventions ◽  
The Core ◽  
Nutritional Guidelines ◽  
Technological Advances ◽  
Digital Twins ◽  
The Impact

ABSTRACT Nutritional and lifestyle changes remain at the core of healthy aging and disease prevention. Accumulating evidence underscores the impact of genetic, metabolic, and host gut microbial factors on individual responses to nutrients, paving the way for the stratification of nutritional guidelines. However, technological advances that incorporate biological, nutritional, lifestyle, and health data at an unprecedented scale and depth conceptualize a future where preventative dietary interventions will exceed stratification and will be highly individualized. We herein discuss how genetic information combined with longitudinal metabolomic, immune, behavioral, and gut microbial parameters, and bioclinical variables could define a digital replica of oneself, a “virtual digital twin,” which could serve to guide nutrition in a personalized manner. Such a model may revolutionize the management of obesity and its comorbidities, and provide a pillar for healthy aging.

scholarly journals P45 The acceptability of using genetic information to guide treatment of asthma to children, young people, and parents (pilot study)

2019 ◽  
Vol 104 (6) ◽  
pp. e35.3-e36
Author(s):  
C King ◽  
L Bracken ◽  
E McDonough ◽  
M Pirmohamed ◽  
M Peak ◽  
...  
Keyword(s):  
Mental Health ◽  
Young People ◽  
Childhood Asthma ◽  
Genetic Information ◽  
Data Privacy ◽  
Personalised Medicine ◽  
Genomic Data ◽  
Health Data ◽  
Special Focus ◽  
Legal Guardians

BackgroundThere are multiple pharmacogenomic studies in children’s asthma. It has not been established how (or if) children, young people or their parents/legal guardians would accept use of their genetic information to guide their treatment.AimTo determine the views of CYP, and parents/legal guardians, on aspects of using genetic testing to guide management of childhood asthma.MethodsFocus group session with both the Liverpool’s young people advisory group (YPAG), and Parents’ group, at Alder Hey Children’s Hospital. Group members completed anonymous questionnaires determining the importance and privacy associated with different themes of data, with a special focus on health data.ResultsThere were 11 responders, five parents/guardians and six CYP. Both the parents and the CYP considered personal data, such as date of birth, NI number and name, both the most important and the most private. Health data was considered the second most important, and private, although parents rated data from social media data an equal second in terms of privacy. Within healthcare data, CYP considered data regarding their mental health, followed by medical conditions and genomic data, as the sources to be of highest importance. Parents considered their child’s illnesses most important, followed by genomic data. In relation to privacy, CYP considered genomic data first followed by information concerning their mental health. The parents considered genomic data highest for data privacy.ConclusionFrom this session it is clear that health data in general, and genetic data in particular, has a high value of importance to CYP and parents, but there are variations in how data is prioritised. These pilot data will inform a large scale patient and parent acceptability study in personalised medicine and childhood asthma (CHANGE study).Disclosure(s)Nothing to disclose

scholarly journals Update on Congenital Myopathies in Adulthood

2020 ◽  
Vol 21 (10) ◽  
pp. 3694
Author(s):  
George Konstantinos Papadimas ◽  
Sophia Xirou ◽  
Evangelia Kararizou ◽  
Constantinos Papadopoulos
Keyword(s):  
Muscle Biopsy ◽  
Genetic Basis ◽  
Late Onset ◽  
Congenital Myopathies ◽  
Histopathological Findings ◽  
Muscle Diseases ◽  
Phenotypic Spectrum ◽  
Clinical Presentations ◽  
Genetic Technologies ◽  
Key Features

Congenital myopathies (CMs) constitute a group of heterogenous rare inherited muscle diseases with different incidences. They are traditionally grouped based on characteristic histopathological findings revealed on muscle biopsy. In recent decades, the ever-increasing application of modern genetic technologies has not just improved our understanding of their pathophysiology, but also expanded their phenotypic spectrum and contributed to a more genetically based approach for their classification. Later onset forms of CMs are increasingly recognised. They are often considered milder with slower progression, variable clinical presentations and different modes of inheritance. We reviewed the key features and genetic basis of late onset CMs with a special emphasis on those forms that may first manifest in adulthood.

The potential of new genetic technologies in selecting for stress resistance in pigs

2005 ◽  
Vol 45 (8) ◽  
pp. 775
Author(s):  
C. A. Kerr ◽  
B. M. Hines
Keyword(s):  
Gene Expression ◽  
Stress Response ◽  
Stress Resistance ◽  
Genetic Basis ◽  
Molecular Mechanisms ◽  
Negative Impact ◽  
Experimental Models ◽  
Genetic Technologies ◽  
On Farm ◽  
Commercial Environment

This paper examines the potential for breeding stress resistance in pigs through an understanding of the physiology of the stress response and its associated genetic basis. Pigs reared in commercial units can encounter numerous concurrent stressors that can have a negative impact on performance and welfare. Stress induces physiological and behavioural responses that are multidimensional, consisting of a complex neuroendocrine and immune signalling milieu. Some stress-related genetic parameters have been identified using conventional genetic approaches applied in experimental models. However, these traits do not capture the complexity of the stress response. As a result, the molecular mechanisms underlying the variation associated with stress resistance in pigs in a commercial environment is poorly understood. Gene expression profiling is a powerful tool that can be applied to systematically elucidate stress response pathways and networks. Consequently, gene expression technologies have been applied to identify some putative stress-regulated genes. Further application of these and more traditional technologies will aid in elucidating stress resistance using gene expression as a measure of phenotypic variation at a molecular level. It is envisaged that in the future, tools for selecting for stress resistance could eventually be applied on-farm to enhance production, health and welfare status.

Genomics, Insurance and Human Rights: Is there a Place for Regulatory Frameworks in Africa?

2006 ◽  
Vol 2 (1) ◽  
pp. 20-34
Author(s):  
Vincent O. Nmehielle
Keyword(s):  
Human Rights ◽  
Health Insurance ◽  
Genetic Information ◽  
Insurance Industry ◽  
Genetic Discrimination ◽  
Insurance Companies ◽  
Genetic Profile ◽  
Regulatory Frameworks ◽  
Health Care Context ◽  
Insurance Decisions

AbstractThis article examines the human rights dimension of genetic discrimination in Africa, exploring the place of regulatory frameworks while taking into account the disadvantaged position of the average African. This is in response to the tendency of insurance companies toward making health insurance decisions on the basis of individual genetic information, which could result in genetic discrimination or health insurance discrimination based on a person's genetic profile. The author considers such questions as the intersection between human rights (right to life, health, privacy, human dignity and against genetic discrimination) in relation to the insurance industry, as well as the obligations of state and non-state actors to promote, respect, and protect the enjoyment of these rights. The article argues that African nations should not stand aloof in trying to balance the competing interests (scientific, economic and social) presented by the use of genetic information in the health care context and that ultimately it is the responsibility of states to develop domestic policies to protect their most vulnerable citizens and to prevent entrenched private discrimination based on an individual's genes.

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