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1.
Eur J Hum Genet ; 27(3): 340-348, 2019 03.
Artigo em Inglês | MEDLINE | ID: mdl-30401960

RESUMO

Fear of genetic discrimination has led individuals worldwide to avoid medically recommended genetic testing and participation in genomics research, causing potential health effects as research and clinical care are stymied. In response, many countries have adopted policies that regulate how insurers, such as life, disability, or critical illness insurers, can underwrite using genetic test results. This article presents a comparison of policies in the United Kingdom, Canada, and Australia, through analysis of interviews with 59 key stakeholders representing insurance, government, advocacy, academia, and genetics. While the ultimate policy of each country is different, the policy motivations and issues raised share commonalities across the countries, particularly around themes of fairness, usefulness of genetic information, and the determination of actuarial fairness.


Assuntos
Privacidade Genética/ética , Testes Genéticos/ética , Seguradoras , Austrália , Canadá , Privacidade Genética/economia , Privacidade Genética/legislação & jurisprudência , Privacidade Genética/tendências , Testes Genéticos/economia , Testes Genéticos/legislação & jurisprudência , Humanos , Opinião Pública , Reino Unido
2.
Ann N Y Acad Sci ; 1387(1): 73-83, 2017 01.
Artigo em Inglês | MEDLINE | ID: mdl-27681358

RESUMO

Accessing and integrating human genomic data with phenotypes are important for biomedical research. Making genomic data accessible for research purposes, however, must be handled carefully to avoid leakage of sensitive individual information to unauthorized parties and improper use of data. In this article, we focus on data sharing within the scope of data accessibility for research. Current common practices to gain biomedical data access are strictly rule based, without a clear and quantitative measurement of the risk of privacy breaches. In addition, several types of studies require privacy-preserving linkage of genotype and phenotype information across different locations (e.g., genotypes stored in a sequencing facility and phenotypes stored in an electronic health record) to accelerate discoveries. The computer science community has developed a spectrum of techniques for data privacy and confidentiality protection, many of which have yet to be tested on real-world problems. In this article, we discuss clinical, technical, and ethical aspects of genome data privacy and confidentiality in the United States, as well as potential solutions for privacy-preserving genotype-phenotype linkage in biomedical research.


Assuntos
Privacidade Genética , Genômica/métodos , Biologia Computacional/ética , Biologia Computacional/normas , Biologia Computacional/tendências , Segurança Computacional , Mineração de Dados/ética , Mineração de Dados/normas , Mineração de Dados/tendências , Privacidade Genética/ética , Privacidade Genética/legislação & jurisprudência , Privacidade Genética/normas , Privacidade Genética/tendências , Genômica/ética , Genômica/normas , Genômica/tendências , Humanos , Consentimento Livre e Esclarecido/legislação & jurisprudência , Consentimento Livre e Esclarecido/normas , Registro Médico Coordenado/normas , Gestão de Riscos , Estados Unidos
3.
Ann N Y Acad Sci ; 1387(1): 61-72, 2017 01.
Artigo em Inglês | MEDLINE | ID: mdl-27626905

RESUMO

The study of human genomics is becoming a Big Data science, owing to recent biotechnological advances leading to availability of millions of personal genome sequences, which can be combined with biometric measurements from mobile apps and fitness trackers, and of human behavior data monitored from mobile devices and social media. With increasing research opportunities for integrative genomic studies through data sharing, genetic privacy emerges as a legitimate yet challenging concern that needs to be carefully addressed, not only for individuals but also for their families. In this paper, we present potential genetic privacy risks and relevant ethics and regulations for sharing and protecting human genomics data. We also describe the techniques for protecting human genetic privacy from three broad perspectives: controlled access, differential privacy, and cryptographic solutions.


Assuntos
Privacidade Genética , Genômica/métodos , Teorema de Bayes , Biologia Computacional/ética , Biologia Computacional/normas , Biologia Computacional/tendências , Segurança Computacional , Mineração de Dados/ética , Mineração de Dados/normas , Mineração de Dados/tendências , Privacidade Genética/ética , Privacidade Genética/legislação & jurisprudência , Privacidade Genética/normas , Privacidade Genética/tendências , Estudo de Associação Genômica Ampla , Genômica/ética , Genômica/normas , Genômica/tendências , Humanos , Aplicativos Móveis/ética , Aplicativos Móveis/normas , Aplicativos Móveis/tendências , Gestão de Riscos , Mídias Sociais/ética , Mídias Sociais/normas , Mídias Sociais/tendências
5.
Annu Rev Med ; 63: 23-33, 2012.
Artigo em Inglês | MEDLINE | ID: mdl-21888511

RESUMO

Direct-to-consumer (DTC) genetic testing has attracted a great amount of attention from policy makers, the scientific community, professional groups, and the media. Although it is unclear what the public demand is for these services, there does appear to be public interest in personal genetic risk information. As a result, many commentators have raised a variety of social, ethical, and regulatory issues associated with this emerging industry, including privacy issues, ensuring that DTC companies provide accurate information about the risks and limitations of their services, the possible adverse impact of DTC genetic testing on healthcare systems, and concern about how individuals may interpret and react to genetic risk information.


Assuntos
Doenças Genéticas Inatas , Privacidade Genética/tendências , Testes Genéticos/tendências , Política de Saúde/tendências , Marketing de Serviços de Saúde/tendências , Doenças Genéticas Inatas/diagnóstico , Doenças Genéticas Inatas/epidemiologia , Doenças Genéticas Inatas/genética , Predisposição Genética para Doença/epidemiologia , Predisposição Genética para Doença/genética , Testes Genéticos/economia , Humanos , Marketing de Serviços de Saúde/economia , Fatores de Risco
7.
Genes Dev ; 24(5): 423-31, 2010 Mar 01.
Artigo em Inglês | MEDLINE | ID: mdl-20194435

RESUMO

The revolution in DNA sequencing technologies has now made it feasible to determine the genome sequences of many individuals; i.e., "personal genomes." Genome sequences of cells and tissues from both normal and disease states have been determined. Using current approaches, whole human genome sequences are not typically assembled and determined de novo, but, instead, variations relative to a reference sequence are identified. We discuss the current state of personal genome sequencing, the main steps involved in determining a genome sequence (i.e., identifying single-nucleotide polymorphisms [SNPs] and structural variations [SVs], assembling new sequences, and phasing haplotypes), and the challenges and performance metrics for evaluating the accuracy of the reconstruction. Finally, we consider the possible individual and societal benefits of personal genome sequences.


Assuntos
Privacidade Genética/tendências , Genoma Humano/genética , Privacidade Genética/economia , Privacidade Genética/ética , Variação Genética , Humanos , Padrões de Referência , Reprodutibilidade dos Testes , Análise de Sequência de DNA/métodos , Análise de Sequência de DNA/normas , Análise de Sequência de DNA/tendências
13.
Artigo em Alemão | MEDLINE | ID: mdl-19547937

RESUMO

The task of public health genomics (PHG) has become a challenge for all healthcare systems having major implications for future research and policy strategies. The various stakeholders in public health play a key role in translating the implications of genomics such as deriving from systems biology, epigenomics, integrative genomics or genome-environmental interactions. Recent advances in systems biology indicate that specific cellular functions are infrequently carried out by single genes, but rather by groups of cellular components. This network-based research is already starting to change nosology as well as to challenge population-based genetic screening or epidemiological methods like HTA. This knowledge will not only enable clinical interventions but also health promotion messages and disease prevention programs to be targeted at susceptible individuals as well as subgroups of the population (personalized healthcare). So far there has been no systematic integration of genome-based knowledge and technologies into public health research, policy, and practice. Thus, the public health agenda demands a vision that reaches beyond the research horizon to arrive at application and health impact of these innovations. The Public Health Genomics European Network (PHGEN) aims to fulfill this task in Europe.


Assuntos
Genética Populacional/tendências , Genômica/tendências , Saúde Pública/tendências , Epigênese Genética , Previsões , Predisposição Genética para Doença/genética , Privacidade Genética/tendências , Testes Genéticos/tendências , Alemanha , Política de Saúde/tendências , Promoção da Saúde/tendências , Acessibilidade aos Serviços de Saúde/tendências , Humanos , Preconceito , Medição de Risco , Meio Social
14.
Am J Med Genet A ; 120A(4): 589-93, 2003 Aug 01.
Artigo em Inglês | MEDLINE | ID: mdl-12884445

RESUMO

At a symposium in June, 2002, biomedical researchers, clinicians, legal experts, policymakers, and representatives of the insurance industry and the advocacy community gathered to address issues of genetic privacy and discrimination; and to identify research, legal, and policy gaps needing to be filled. They concluded that over the next decade, as more genetic information becomes available and the public becomes more aware of individual risks, concerns about privacy and discrimination will become increasingly important. Documented cases of genetic discrimination are rare and largely anecdotal, yet individuals with genetic conditions harbor significant fears about discrimination. Current laws enacted to protect individuals from workplace and insurance discrimination offer some measure of protection, but leave many unfilled gaps. Moreover, the use of genetic information in potentially discriminatory ways is not limited to employment and insurability. Existing laws do little to protect people seeking life, disability, or long-term care insurance. And the courts have used genetic information in a wide variety of cases including paternity, criminal, and tort (personal injury) cases. Genetic information that might jeopardize an individual's right to privacy may also be obtained in the course of research studies, including through the collection of DNA and tissue samples. The insurance industry, State and Federal agencies, and the advocacy community are all making efforts to address some of these gaps through legislation and education of clinicians, the public, and policy makers.


Assuntos
Privacidade Genética/legislação & jurisprudência , Privacidade Genética/tendências , Preconceito , Emprego , Testes Genéticos/legislação & jurisprudência , Seguro , Risco
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