RESUMEN
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.
Asunto(s)
Neoplasias de la Mama/diagnóstico , Hallazgos Incidentales , Análisis de Secuencia de ADN , Encuestas y Cuestionarios , Adulto , Neoplasias de la Mama/genética , Neoplasias de la Mama/psicología , Femenino , Pruebas Genéticas , Genoma Humano , Humanos , Persona de Mediana EdadRESUMEN
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.
Asunto(s)
Directivas Anticipadas , Toma de Decisiones , Planificación Anticipada de Atención , Anciano , Femenino , Política de Salud , Humanos , Masculino , Calidad de VidaAsunto(s)
Anciano , Demencia , Experimentación Humana/ética , Política Pública , Directivas Anticipadas , Comités Consultivos , Toma de Decisiones , Guías como Asunto , Experimentación Humana/normas , Humanos , Consentimiento Informado , Competencia Mental/normas , Apoderado , Medición de Riesgo , Estados UnidosAsunto(s)
Directivas Anticipadas , Demencia , Guías como Asunto , Experimentación Humana/ética , Experimentación Humana/normas , Directivas Anticipadas/ética , Comités Consultivos , Anciano , Comprensión , Revelación , Investigación Empírica , Regulación Gubernamental , Humanos , Consentimiento Informado , Competencia Mental , Autonomía Personal , Apoderado , Gobierno Estatal , Estados Unidos , Poblaciones VulnerablesAsunto(s)
Cuidado del Niño/legislación & jurisprudencia , Crimen/legislación & jurisprudencia , Reproducción , Adulto , Niño , Cuidado del Niño/economía , Humanos , Masculino , Oklahoma , Esterilización Involuntaria/legislación & jurisprudencia , Decisiones de la Corte Suprema , Estados Unidos , WisconsinAsunto(s)
Consentimiento Informado , Donación de Oocito , Adulto , Publicidad , Bioética , Decepción , Revelación , Honorarios y Precios , Femenino , Servicios de Salud/normas , Humanos , Motivación , Donación de Oocito/efectos adversos , Donación de Oocito/economía , Investigación , Riesgo , Donantes de TejidosAsunto(s)
Investigación Biomédica , Revelación , Regulación Gubernamental , Difusión de la Información , Servicios de Información/legislación & jurisprudencia , Investigación/legislación & jurisprudencia , Confidencialidad/legislación & jurisprudencia , Gobierno Federal , Humanos , Privacidad/legislación & jurisprudencia , Apoyo a la Investigación como Asunto/legislación & jurisprudencia , Responsabilidad Social , Estados UnidosAsunto(s)
Regulación Gubernamental , Defensa del Paciente/legislación & jurisprudencia , Guías de Práctica Clínica como Asunto/normas , Técnicas Reproductivas/legislación & jurisprudencia , Técnicas Reproductivas/normas , California , Centers for Disease Control and Prevention, U.S. , Humanos , Autonomía Profesional , Competencia Profesional/legislación & jurisprudencia , Competencia Profesional/normas , Estados Unidos , United States Food and Drug AdministrationAsunto(s)
Implantes de Mama/efectos adversos , Seguridad de Productos para el Consumidor/legislación & jurisprudencia , Testimonio de Experto , Responsabilidad Legal , Investigación/normas , Comités Consultivos , Investigación Biomédica , Causalidad , Enfermedades del Tejido Conjuntivo/inducido químicamente , Gobierno Federal , Femenino , Humanos , Enfermedades del Complejo Inmune/inducido químicamente , Abogados , Geles de Silicona/efectos adversos , Incertidumbre , Estados UnidosRESUMEN
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.