Failure to Provide Adequate Palliative Care May Be Medical Neglect.

Doctors are required to notify Child Protective Services (CPS) if parents do not provide appropriate medical care for their children. But criteria for reporting medical neglect are vague. Which treatments properly fall within the realm of shared decision-making in which parents can decide whether to accept doctors' recommendations? Which treatments are so clearly in the child's interest that it would be neglectful to refuse them? When to report medical neglect concerns to CPS may be controversial. It would seem inhumane to allow a child to suffer because of parental refusal to administer proper analgesia. In this ethics rounds, we present a case of an adolescent with chronic pain who is terminally ill. Her parents were not adherent to recommended analgesia regimens. Her palliative care team had to decide whether to report the case to CPS.

Genética a gusto del consumidor: una práctica que no encaja en nuestro Derecho / No disponible

Los test genéticos directos al consumidor tienen por objeto conocer la predisposición a padecer enfermedades comunes de origen multifactorial. Tal y como se ofrecen constituyen un reclamo cuya calidad y utilidad no ha sido probada, ya que, en muchos casos, no predicen el desarrollo de la enfermedad ni su gravedad. Objeciones tales como la falta de información y de consejo genético, el impacto en el individuo y en su familia, la agresiva publicidad y el riesgo de estigmatización justifican la adopción de cautelas y el sometimiento a unos estrictos estándares éticos y jurídicos

Direct-to-consumer genetic testing aim to meet the predisposition to common diseases of multifactorial origin. These tests are offered as a form of claim whose quality and usefulness has not been tested, since in many cases do not predict the development of the disease or its severity. Objections such as lack of information and genetic counselling, the impact on the individual and his family, aggressive advertising and the risk of stigmatization justify the need to take precautionary measures and to be subject to strict ethical and legal standards

Free access to genetic testing - guaranteeing or threatening the right to privacy?

The development of market for commercial genetic testing allows free access to them for an unlimited number of people. Everyone can carry out genetic tests in every chosen medical service provider and receive interesting results. Moreover, the transfer of genetic material for testing and the results of these tests may be sent by post without a personal visit in the service provider. Theoretically, free access to genetic tests can be assessed as a guarantee of the right to protect private life. Everyone can receive detailed information about his person, in particular in the field of health and existing or potential diseases. Therefore, the genetic tests give the opportunity to broaden the scope of information about the state of health. What is more important, this information can allow, for instance, to choose appropriate treatment or to make some preventive decisions. In this context, even the ECHR treats the access to genetic testing as a possible way to guarantee the right to protect private life (for example prenatal genetic testing). However, free access to genetic tests is also connected with the threat to the right to protect private life. The possibility of sending the biological material for testing by post and the easy access to this material opens wide possibilities for receiving the genetic data of any person. This method of conducting genetic tests does not allow to prevent from obtaining the sensitive data of another person without his/her knowledge and consent. Furthermore, the advisory services for people conducting genetic tests privately does not exist. Patients cannot receive the proper interpretation of the results of genetic tests obtained commercially. Misinterpreted results of genetic tests may have the very negative impact on the life, on life decisions, and consequently on the realization of the right to protect private life. Therefore, he admissibility of conducting commercial genetic testing, in particular conducting by post, requires an appropriate balance between guarantees and threats to the right to protect private life. The proper protection of this right probably requires that direct-to-consumer genetic tests probably should be done only on the order of a physician

El desarrollo del mercado de pruebas genéticas comerciales permite el acceso gratuito a ellas para un número ilimitado de personas. Todo el mundo puede realizar pruebas genéticas con cada proveedor de servicios médicos elegido y recibir resultados interesantes. Además, la transferencia de material genético para las pruebas y los resultados de éstas, pueden enviarse por correo sin una visita personal al proveedor del servicio. Teóricamente, el acceso libre a pruebas genéticas puede evaluarse como una garantía del derecho a proteger la vida privada. Todo el mundo puede recibir información detallada sobre su persona, en particular en el campo de la salud y las enfermedades existentes o potenciales. Por lo tanto, las pruebas genéticas brindan la oportunidad de ampliar el alcance de la información sobre el estado de salud. Lo que es más importante, esta información puede permitir, por ejemplo, elegir el tratamiento adecuado o tomar algunas decisiones preventivas. En este contexto, incluso el Tribunal Europeo de Derechos Humanos trata el acceso a las pruebas genéticas como una forma posible de garantizar el derecho a proteger la vida privada (por ejemplo, pruebas genéticas prenatales). Sin embargo, el libre acceso a las pruebas genéticas también está relacionado con la amenaza al derecho de proteger la vida privada. La posibilidad de enviar el material biológico para la prueba por correo y el fácil acceso a este material abre amplias posibilidades para recibir los datos genéticos de cualquier persona. Este método de realizar pruebas genéticas no permite evitar la obtención de datos confidenciales de otra persona sin su conocimiento y consentimiento. Además, los servicios de asesoramiento para personas que realizan pruebas genéticas de forma privada no existen. Los pacientes no pueden recibir la interpretación adecuada de los resultados de las pruebas genéticas obtenidas comercialmente. Los resultados malinterpretados de las pruebas genéticas pueden tener un impacto muy negativo en la vida, en decisiones vitales y, en consecuencia, en la realización del derecho a proteger la vida privada. Por lo tanto, la admisibilidad de realizar pruebas genéticas comerciales, en particular la realización por correo, requiere un equilibrio adecuado entre las garantías y las amenazas al derecho a proteger la vida privada. La protección adecuada de este derecho probablemente requiera que las pruebas genéticas directas al consumidor solo se realicen por orden de un médico

Commercial speech in the realm of direct-to- consumer genetic testing. Are the current bans in the Spanish legal framework necessary and proportionate?

This paper explores the right to commercial speech of the companies that offer Direct To Consumer (DTC) genetic tests in the market. The paper discusses whether the bans to commercial speech currently in force in Spain are necessary and proportional or not, attending to the rights and public interests they try to protect, and balancing them with the communicative rights of the companies and the customers

El presente artículo analiza el derecho a la comunicación publicitaria de las empresas que ofrecen test directos al consumidor. Tras un análisis de la normativa vigente en España, se plantea la necesidad y proporcionalidad de las restricciones que el ordenamiento español impone a este tipo de publicidad, ponderando los intereses en conflicto: de un lado, el derecho a la comunicación de las empresas y los potenciales clientes de otro, la protección de la salud pública y de los consumidores y usuarios

OBLIGING SURGEONS TO ENHANCE: NEGLIGENCE LIABILITY FOR UNCORRECTED FATIGUE AND PROBLEMS WITH PROVING CAUSATION.

Increasing interest in the use of cognitive enhancing pharmaceuticals, such as modafinil, has led to considerable ethical debate about issues around authenticity, fairness and even whether there is a moral obligation to enhance. This latter question has raised questions as to whether there might be a legal obligation to enhance. We have argued elsewhere that the law will not oblige a professional to self-enhance. In this article, we explore a second reason why a claim of negligence for a failure to enhance would be unlikely to succeed: the problem of establishing causation. As the science on enhancers and what they are capable of currently stands, it would be almost invariably impossible to establish a causal link between failure to enhance to redress fatigue, and the harm that allegedly resulted. Even where a link between fatigue and harm can be established, it will be extremely difficult to show that taking an enhancer would have averted the harm. We focus on the most likely context in which such claims might arise--clinical negligence--and on the most efficacious enhancing drug currently available-modafinil.