RESUMO
BACKGROUND: Genetic information is unique among all laboratory data because it not only informs the current health of the specific person tested but may also be predictive of the future health of the individual and, to varying degrees, all biological relatives. CONTENT: As DNA sequencing has become ubiquitous with decreasing cost, large repositories of genomic data have emerged from the domains of research, healthcare, law enforcement, international security, and recreational consumer interest (i.e., genealogy). Broadly shared genomic data are believed to be a key element for future discoveries in human disease. For example, the National Cancer Institute's Genomic Data Commons is designed to promote cancer research discoveries by providing free access to the genome data sets of 12000 cancer patients. However, in parallel with the promise of curing diseases, genomic data also have the potential for harm. Genomic data that are deidentified by standard healthcare practices (e.g., removal of name, date of birth) can be reidentified by methods that combine genomic software with publicly available demographic databases (e.g., phone book). Recent law enforcement cases (i.e., Bear Brook Murders, Golden State Killer) in the US have demonstrated the power of combining DNA profiles with genealogy databases. SUMMARY: We examine the current environment of genomic privacy and confidentiality in the US and describe current and future risks to genomic privacy. Reidentification and inference of genetic information of biological relatives will become more important as larger databases of clinical, criminal, and recreational genomic information are developed over the next decade.
Assuntos
Privacidade Genética , Testes Genéticos , Segurança Computacional/ética , Segurança Computacional/legislação & jurisprudência , Bases de Dados Factuais , Genética Forense/ética , Genética Forense/legislação & jurisprudência , Privacidade Genética/ética , Privacidade Genética/legislação & jurisprudência , Testes Genéticos/ética , Testes Genéticos/legislação & jurisprudência , Testes Genéticos/métodos , Genoma Humano , Regulamentação Governamental , Humanos , Disseminação de InformaçãoAssuntos
Beneficência , Confidencialidade/ética , Confidencialidade/legislação & jurisprudência , Health Insurance Portability and Accountability Act , Consentimento Livre e Esclarecido/ética , Seleção de Pacientes/ética , Autonomia Pessoal , Pesquisadores , Pesquisa/organização & administração , HumanosAssuntos
Centros Médicos Acadêmicos , Publicidade , Conflito de Interesses , Indústria Farmacêutica , Prescrições de Medicamentos , Doações/ética , Julgamento/ética , Padrões de Prática Médica/ética , Centros Médicos Acadêmicos/ética , Publicidade/ética , Conflito de Interesses/economia , Indústria Farmacêutica/economia , Indústria Farmacêutica/ética , Prescrições de Medicamentos/economia , Ética Médica , Humanos , Médicos/economia , Médicos/ética , Padrões de Prática Médica/economia , Política Pública , Sociedades Médicas , Confiança , Estados UnidosAssuntos
Ensaios Clínicos como Assunto/ética , Ensaios Clínicos como Assunto/legislação & jurisprudência , Pesquisadores/legislação & jurisprudência , Sujeitos da Pesquisa , Tomada de Decisões , Ética em Pesquisa , Governo Federal , Experimentação Humana/ética , Experimentação Humana/legislação & jurisprudência , Humanos , Intenção , Pesquisadores/ética , Sujeitos da Pesquisa/legislação & jurisprudência , Sujeitos da Pesquisa/psicologia , Estados UnidosRESUMO
Empirical research in social psychology has provided robust support for the accuracy of the heuristics and biases approach to human judgment. This research, however, has not been systematically investigated regarding its potential applications for specific health care decision-makers. This paper makes the case for investigating the heuristics and biases approach in the patient-physician relationship and recommends strategic empirical research. It is argued that research will be valuable for particular decisions in the clinic and for examining and altering the background conditions of patient and physician decision-making.
Assuntos
Teoria da Decisão , Relações Médico-Paciente , Resolução de Problemas , Comportamento de Escolha , Diagnóstico , Humanos , PreconceitoRESUMO
Epistemic trust is an unacknowledged feature of medical knowledge. Claims of medical knowledge made by physicians, patients, and others require epistemic trust. And yet, it would be foolish to define all epistemic trust as epistemically responsible. Accordingly, I use a routine example in medical practice (a diagnostic test) to illustrate how epistemically responsible trust in medicine is trust in epistemically responsible individuals. I go on to illustrate how certain areas of current medical practice of medicine fall short of adequately distinguishing reliable and unreliable processes because of a failure to systematically evaluate health outcomes. I conclude by articulating the devastating obstacles to the consilience assumption, which takes intellectual character (rather than reliable belief-forming processes) as the standard for epistemic responsibility.