RESUMO
While experts have made recommendations, information is needed regarding what genome sequencing results patients would want returned. We investigated what results women diagnosed with breast cancer at a young age would want returned and why. We conducted 60 semi-structured, in-person individual interviews with women diagnosed with breast cancer at age 40 or younger. We examined interest in six types of incidental findings and reasons for interest or disinterest in each type. Two coders independently coded interview transcripts; analysis was conducted using NVivo 10. Most participants were at least somewhat interested in all six result types, but strongest interest was in actionable results (i.e. variants affecting risk of a preventable or treatable disease and treatment response). Reasons for interest varied between different result types. Some participants were not interested or ambivalent about results not seen as currently actionable. Participants wanted to be able to choose what results are returned. Participants distinguished between types of individual genome sequencing results, with different reasons for wanting different types of information. The findings suggest that a focus on actionable results can be a common ground for all stakeholders in developing a policy for returning individual genome sequencing results.
Assuntos
Neoplasias da Mama/diagnóstico , Achados Incidentais , Análise de Sequência de DNA , Inquéritos e Questionários , Adulto , Neoplasias da Mama/genética , Neoplasias da Mama/psicologia , Feminino , Testes Genéticos , Genoma Humano , Humanos , Pessoa de Meia-IdadeRESUMO
BACKGROUND: Instructional advance directives are widely advocated as a means of preserving patient self-determination at the end of life based on the assumption that they improve surrogates' understanding of patients' life-sustaining treatment wishes. However, no research has examined whether instructional directives are effective in improving the accuracy of surrogate decisions. PARTICIPANTS AND METHODS: A total of 401 outpatients aged 65 years or older and their self-designated surrogate decision makers (62% spouses, 29% children) were randomized to 1 of 5 experimental conditions. In the control condition, surrogates predicted patients' preferences for 4 life-sustaining medical treatments in 9 illness scenarios without the benefit of a patient-completed advance directive. Accuracy in this condition was compared with that in 4 intervention conditions in which surrogates made predictions after reviewing either a scenario-based or a value-based directive completed by the patient and either discussing or not discussing the contents of the directive with the patient. Perceived benefits of advance directive completion were also measured. RESULTS: None of the interventions produced significant improvements in the accuracy of surrogate substituted judgment in any illness scenario or for any medical treatment. Discussion interventions improved perceived surrogate understanding and comfort for patient-surrogate pairs in which the patient had not completed an advance directive prior to study participation. CONCLUSIONS: Our results challenge current policy and law advocating instructional advance directives as a means of honoring specific patient wishes at the end of life. Future research should explore other methods of improving surrogate decision making and consider the value of other outcomes in evaluating the effectiveness of advance care planning.
Assuntos
Diretivas Antecipadas , Tomada de Decisões , Planejamento Antecipado de Cuidados , Idoso , Feminino , Política de Saúde , Humanos , Masculino , Qualidade de VidaAssuntos
Idoso , Demência , Experimentação Humana/ética , Política Pública , Diretivas Antecipadas , Comitês Consultivos , Tomada de Decisões , Guias como Assunto , Experimentação Humana/normas , Humanos , Consentimento Livre e Esclarecido , Competência Mental/normas , Procurador , Medição de Risco , Estados UnidosAssuntos
Diretivas Antecipadas , Demência , Guias como Assunto , Experimentação Humana/ética , Experimentação Humana/normas , Diretivas Antecipadas/ética , Comitês Consultivos , Idoso , Compreensão , Revelação , Pesquisa Empírica , Regulamentação Governamental , Humanos , Consentimento Livre e Esclarecido , Competência Mental , Autonomia Pessoal , Procurador , Governo Estadual , Estados Unidos , Populações VulneráveisAssuntos
Cuidado da Criança/legislação & jurisprudência , Crime/legislação & jurisprudência , Reprodução , Adulto , Criança , Cuidado da Criança/economia , Humanos , Masculino , Oklahoma , Esterilização Involuntária/legislação & jurisprudência , Decisões da Suprema Corte , Estados Unidos , WisconsinAssuntos
Consentimento Livre e Esclarecido , Doação de Oócitos , Adulto , Publicidade , Bioética , Enganação , Revelação , Honorários e Preços , Feminino , Serviços de Saúde/normas , Humanos , Motivação , Doação de Oócitos/efeitos adversos , Doação de Oócitos/economia , Pesquisa , Risco , Doadores de TecidosAssuntos
Pesquisa Biomédica , Revelação , Regulamentação Governamental , Disseminação de Informação , Serviços de Informação/legislação & jurisprudência , Pesquisa/legislação & jurisprudência , Confidencialidade/legislação & jurisprudência , Governo Federal , Humanos , Privacidade/legislação & jurisprudência , Apoio à Pesquisa como Assunto/legislação & jurisprudência , Responsabilidade Social , Estados UnidosAssuntos
Regulamentação Governamental , Defesa do Paciente/legislação & jurisprudência , Guias de Prática Clínica como Assunto/normas , Técnicas Reprodutivas/legislação & jurisprudência , Técnicas Reprodutivas/normas , California , Centers for Disease Control and Prevention, U.S. , Humanos , Autonomia Profissional , Competência Profissional/legislação & jurisprudência , Competência Profissional/normas , Estados Unidos , United States Food and Drug AdministrationAssuntos
Implantes de Mama/efeitos adversos , Qualidade de Produtos para o Consumidor/legislação & jurisprudência , Prova Pericial , Responsabilidade Legal , Pesquisa/normas , Comitês Consultivos , Pesquisa Biomédica , Causalidade , Doenças do Tecido Conjuntivo/induzido quimicamente , Governo Federal , Feminino , Humanos , Doenças do Complexo Imune/induzido quimicamente , Advogados , Géis de Silicone/efeitos adversos , Incerteza , Estados UnidosRESUMO
Members of Congress and officials of the National Institutes of Health face heightened pressure from public advocacy groups seeking more funding for research on specific health conditions. In response, Congress and the Institute of Medicine have urged the NIH to create more opportunities for the public to participate in decision making on allocation of biomedical research resources. The ethical and policy implications of including advocates in the deliberations are explored, leading to the conclusion that public participation could contribute to more defensible decisions under three conditions: public participants are fairly selected and meaningful opinions are solicited; public participants look beyond their narrow constituencies to consider the health needs of the broader public; and NIH officials develop materials to assist participants with their deliberations.