ABSTRACT
Studies on genomic privacy have traditionally focused on identifying individuals using DNA variants. In contrast, molecular phenotype data, such as gene expression levels, are generally assumed to be free of such identifying information. Although there is no explicit genotypic information in phenotype data, adversaries can statistically link phenotypes to genotypes using publicly available genotype-phenotype correlations such as expression quantitative trait loci (eQTLs). This linking can be accurate when high-dimensional data (i.e., many expression levels) are used, and the resulting links can then reveal sensitive information (for example, the fact that an individual has cancer). Here we develop frameworks for quantifying the leakage of characterizing information from phenotype data sets. These frameworks can be used to estimate the leakage from large data sets before release. We also present a general three-step procedure for practically instantiating linking attacks and a specific attack using outlier gene expression levels that is simple yet accurate. Finally, we describe the effectiveness of this outlier attack under different scenarios.
Subject(s)
Anonymous Testing/methods , Computer Security , Confidentiality , Data Mining/methods , Databases, Genetic , Genetic Privacy/organization & administration , Genotype , Humans , Phenotype , Quantitative Trait Loci/geneticsABSTRACT
No disponible
Subject(s)
Humans , Biological Specimen Banks/organization & administration , Genetic Privacy/organization & administration , Genetic Research/ethics , Personal Autonomy , ConfidentialitySubject(s)
Computer Security , Genetic Privacy/organization & administration , Genetics, Medical/organization & administration , Genetics/organization & administration , Genomics/organization & administration , Medical Oncology/organization & administration , Organizational Policy , Forecasting , International Agencies/organization & administration , Societies/organization & administrationABSTRACT
No disponible
Subject(s)
Humans , Male , Female , Genetic Privacy/legislation & jurisprudence , Genetic Privacy/organization & administration , Genetic Privacy/trends , Computer Security/legislation & jurisprudence , Computer Security , Computer Security/standards , Computer Security/statistics & numerical data , Computer Security/trendsABSTRACT
An integration of scientific associations involved in public health and genetics to apply genetics achievements might create new perspectives of public health and health promotion in Poland and allow to apply genomic applications that are currently in transition from research to public health practice. Activities might enable to undertake preventive actions as population screening programs based on genome-based knowledge and technologies as targeted preventive interventions. The achievements in the field of public health genetics or genomics have been taking place in several countries and have begun to have an impact on population health status.
Subject(s)
Genetic Predisposition to Disease/classification , Genetic Testing/methods , Genetics, Population/classification , Genomics/organization & administration , Health Promotion/organization & administration , Genetic Privacy/organization & administration , Humans , Poland , Public Health , Social EnvironmentABSTRACT
Antecedentes: Las muestras de orina que con frecuencia son utilizadas para análisis clínicos, toxicológicos o tets de control de dopaje, pueden verse mezcladas de forma inconsciente o manipuladas intencionalmente. Objetivos: Disponer de una técnica que permita asegurar la identidad de las muestras de orina. Se propone la identificación del donante a partir de la comparación de perfiles genéticos en muestras de orina y sangre. Comparamos dos métodos de extracción de DNA nuclear. Material y métodos: Extracción de DNA a partir de dos métodos, el protocolo Master Diagnostica (VITRO, S.A.) y el método automático MagNa Pure® de Roche. Se establece los perfiles genéticos según el AmpFlSTR® Identifiler® PCR Amplification Kit (Applied Biosystems). Resultados: Se obtuvo 100 % de concordancias entre los perfiles de los dos tipos de muestras. Conclusiones: Tanto de forma manual como automática se puede obtener DNA a partir de muestras de orina. Ambos métodos son válidos, si bien con el manual, se obtiene mayor cantidad de DNA. Se puede identificar al donante de una muestra de orina comparando los perfiles genéticos de la orina y de la sangre. La extracción del DNA de la orina y su posterior almacenamiento a -80ºC permite el establecimiento del perfil genético a posteriori sin alteraciones (AU)
SUMMARY: Antecedents: Urine samples that are often utilized for clinical, toxicological or doping control tests can be mistaken involuntarily or intentionally tampered with. Objective: To make available a technique that ensures the identity of urine samples. We propose the identification of the donor through genetic profiling in blood and urine samples. Two methods of nuclear DNA extraction are compared. Material and methods: DNA is extracted by two methods, the method of Master Diagnostica (VITRO S.A.) and the automatic method MagNa Pure® of Roche. The genetic profiles are established utilizing the AmpFlSTR® Identifiler® PCR Amplification Kit (Applied Biosystems). Results: The correspondence between the profiles of both types of samples was 100%. Conclusions: DNA can be obtained from urine samples manually or automatically. Both methods are valid although the manual method yields more DNA. The donor of a urine sample can be identified comparing the genetic profiles of urine and blood. The extraction of DNA from urine and its subsequent storage at -80ºC allows for establishing later a genetic profile without alterations (AU)
Subject(s)
Humans , DNA/urine , Sequence Analysis, DNA/methods , Patient Identification Systems/organization & administration , DNA Fingerprinting/methods , Genetic Privacy/organization & administration , Specimen Handling/methodsSubject(s)
Genetic Testing/standards , Quality Assurance, Health Care/standards , Canada , Community Participation , Genetic Privacy/organization & administration , Genetic Privacy/standards , Humans , Marketing of Health Services/standards , Physician's Role , Practice Guidelines as Topic , Public Health/standards , Quality Assurance, Health Care/organization & administrationSubject(s)
Genetic Privacy/organization & administration , Genetic Testing/methods , Health Knowledge, Attitudes, Practice , Internet , Marketing of Health Services/organization & administration , Commerce/economics , Genetic Predisposition to Disease/genetics , Genetic Privacy/economics , Genetic Testing/economics , Humans , Information Services/organization & administration , Marketing of Health Services/economics , Risk Assessment , United StatesABSTRACT
The Human Genome Project will change how health is defined and how disease is prevented, diagnosed, and treated. As the largest group of health care providers in contact with patients, nurses need to be competent in the science of genetics. Beyond this, nurses need to understand the complexities that arise in genomic health care. Ethical, legal, and social issues are integral to the delivery of genomic health care, and nurses must have an astute understanding of such complexities. What it means to know, to reason, and to act in this postgenomic age is explored.
Subject(s)
Genetics, Medical/ethics , Human Genome Project/ethics , Nurse's Role , Patient Advocacy/ethics , Clinical Competence , Codes of Ethics , Genetic Privacy/ethics , Genetic Privacy/organization & administration , Genetic Techniques/ethics , Genetic Techniques/nursing , Genetic Testing/ethics , Genetic Testing/organization & administration , Genetics, Medical/education , Genetics, Medical/organization & administration , Health Knowledge, Attitudes, Practice , Health Services Accessibility/ethics , Health Services Accessibility/organization & administration , Health Services Needs and Demand , Human Genome Project/organization & administration , Humans , Patient Education as Topic/ethics , Patient Education as Topic/organization & administration , Prenatal Diagnosis/ethics , Prenatal Diagnosis/nursing , Referral and Consultation/ethics , Referral and Consultation/organization & administrationABSTRACT
Exponentially growing biological and bioinformatics data sets present a challenge and an opportunity for researchers to contribute to the understanding of the genetic basis of phenotypes. Due to breakthroughs in microarray technology, it is possible to simultaneously monitor the expressions of thousands of genes, and it is imperative that researchers have access to the clinical data to understand the genetics and proteomics of the diseased tissue. This technology could be a landmark in personalized medicine, which will provide storage for clinical and genetic data in electronic health records (EHRs). In this paper, we explore the computational and ethical challenges that emanate from the intersection of bioinformatics and healthcare informatics research. We describe the current situation of the EHR and its capabilities to store clinical and genetic data and then discuss the Genetic Information Nondiscrimination Act. Finally, we posit that the synergy obtained from the collaborative efforts between the genomics, clinical, and healthcare disciplines has potential to enhance and promote faster and more advanced breakthroughs in healthcare.
Subject(s)
Computational Biology , Electronic Health Records , Genetic Research , Medical Informatics , Translational Research, Biomedical , Computational Biology/ethics , Computational Biology/organization & administration , Cooperative Behavior , Data Mining , Databases, Genetic/ethics , Electronic Health Records/ethics , Electronic Health Records/organization & administration , Forecasting , Genetic Privacy/ethics , Genetic Privacy/organization & administration , Genetic Research/ethics , Humans , Information Management/organization & administration , Medical Informatics/ethics , Medical Informatics/organization & administration , Medical Record Administrators/organization & administration , Natural Language Processing , Precision Medicine/ethics , Precision Medicine/methods , Precision Medicine/trends , Translational Research, Biomedical/ethics , Translational Research, Biomedical/organization & administration , United StatesABSTRACT
Medical uses of genetic information have multiplied over the last several years. When an individual is a carrier of a clinically important allele, their kindred are at increased risk of carrying the same allele and of sharing the consequent risk of disease. If there were an intervention that could modify the risk of progression to disease, then there would be a clear advantage to kindred to be so informed. However, some probands may resist divulging that information to kindred for any of a variety of reasons, including the potential for discrimination. In this article we will review the manner in which the courts and professional organizations have viewed the conflict between 1 individual's right to privacy and another's right to information that could potentially be life saving or life prolonging. We will then consider the ethics of this issue and suggest an approach that physicians should take when confronting it.
Subject(s)
Ethics, Clinical , Genetic Privacy/ethics , Genetic Privacy/organization & administration , Genetic Testing/ethics , Genetic Testing/legislation & jurisprudence , Confidentiality/ethics , Confidentiality/legislation & jurisprudence , Female , Genetic Counseling , Humans , Physician-Patient Relations , United StatesABSTRACT
This article introduces some of the issues involved in genetic testing and information, particularly the utility and limitations of such testing. Psychosocial and ethical issues that may arise in this area are also discussed. The aim of this article is to stimulate readers' awareness of and insight into these matters in the hope that practitioners will examine and reflect on the applicability of these to their area of practice.
Subject(s)
Genetic Counseling , Genetic Testing , Conflict, Psychological , Dissent and Disputes , Family/psychology , Genetic Counseling/ethics , Genetic Counseling/methods , Genetic Counseling/psychology , Genetic Predisposition to Disease/genetics , Genetic Predisposition to Disease/psychology , Genetic Privacy/ethics , Genetic Privacy/organization & administration , Genetic Privacy/psychology , Genetic Testing/methods , Genetic Testing/psychology , Humans , Nurse's Role , Predictive Value of Tests , Principle-Based Ethics , Professional Competence , Truth Disclosure/ethics , United KingdomABSTRACT
En este artículo se examinan algunos problemas regulatorios asociados con la extensión de las pruebas genéticas en la predicción de determinadas enfermedades con efectos potencialmente graves sobre la salud y el estatus económico de las personas. Analizamos los efectos del desarrollo de la prueba genética sobre el bienestar en el marco del mecanismo asegurador sanitario. Argumentamos, más allá de cuestiones de naturaleza ética, que la extensión y difusión de la información genética constituye un elemento adicional de eficiencia a favor del mantenimiento de un sistema de aseguramiento obligatorio de enfermedad
This paper examines some regulatory issues of extending the genetic screening to predict illness. In particular, we discuss the welfare effects of the developing genetic screening in insuring health care. We argue that, among ethical aspects, the the extension of genetic information is an efficiency arguments for the naintainance of a compulsory health care insurance
Subject(s)
Humans , Genetic Predisposition to Disease/epidemiology , Genetic Privacy/organization & administration , Insurance Claim Reporting/ethics , Genetic Techniques , Confidentiality/ethics , Genetic Privacy/ethics , Access to Information/ethicsABSTRACT
The genetic revolution has spawned 4 distinct issues of universal importance to health care policy and society: genetic privacy, regulation and standardization of genetic tests, gene patenting, and education. Adequate policy advancements for these 4 areas are lacking. Stringent controls must be placed on individual health records to prevent their misuse. Genetic testing within the clinical setting should undergo thorough evaluation before it is implemented. Regulations are needed to prevent the monopolization of DNA sequences. Society and health care professionals must be educated about the scope of genetic testing because current trends indicate that genetic and molecular assessments are destined to become a routine component of health care.
Subject(s)
Genetics, Medical , Health Policy/trends , Public Health/trends , Base Sequence , Genetic Privacy/organization & administration , Genetic Research , Genetic Techniques/standards , Genetic Techniques/trends , Genetics, Medical/education , Genetics, Medical/organization & administration , Guidelines as Topic , Health Education/organization & administration , Health Occupations/education , Human Genome Project/organization & administration , Humans , Needs Assessment , Organizational Innovation , Patents as Topic , Policy Making , Social Control, Formal , United StatesABSTRACT
Society is currently on the threshold of a new revolution in understanding the interaction of genes and the environment. This research has profound implications for understanding occupational disease and will present ethical challenges to occupational health practice. The public must be educated about the potential promise, as well as the threats, posed by emerging genetic technologies.
Subject(s)
Environmental Health/organization & administration , Genetics, Medical/organization & administration , Occupational Health , Primary Prevention/organization & administration , Confidentiality/ethics , Confidentiality/legislation & jurisprudence , Confidentiality/trends , Environmental Exposure/adverse effects , Environmental Health/ethics , Forecasting , Genetic Markers/genetics , Genetic Predisposition to Disease/etiology , Genetic Predisposition to Disease/genetics , Genetic Predisposition to Disease/prevention & control , Genetic Privacy/ethics , Genetic Privacy/organization & administration , Genetic Research/ethics , Genetic Research/legislation & jurisprudence , Genetic Testing/ethics , Genetic Testing/organization & administration , Genetics, Medical/ethics , Humans , Occupational Health/legislation & jurisprudence , Prejudice , Technology Assessment, Biomedical/ethics , Technology Assessment, Biomedical/organization & administration , United StatesABSTRACT
Advances in toxicogenomics research may allow the identification of individuals who may be hyper-susceptible to occupational exposures and could create a shift from population to individual-based risk assessment in occupational health. Although many states have passed legislation to prevent the misuse of genetic information in employment, there is no general federal protection from the use of genetic information after a conditional offer of employment. Occupational health professionals have a crucial role in shaping future guidelines governing the use of genetic information in employment.
