Informing family members of individuals with Lynch syndrome: a guideline for clinical geneticists.

The diagnosis of Lynch syndrome can lead to the prevention of colorectal cancer through periodic colonoscopies and removal of premalignant lesions in susceptible individuals. Therefore, predisposed individuals identified by mutation analysis are advised to inform their at-risk relatives about the options of predictive DNA testing and preventive measures. However, it has now been established that more than half of these relatives do not receive the necessary information. Barriers in conveying information include family communication problems and variable attitudes and practice among clinical geneticists. In this complex field, both medical, psychological, ethical and juridical aspects deserve consideration. Here we summarize the development of a revised guideline for clinical geneticists that allows a more active role of the geneticist, aimed at improving procedures to inform family members in Lynch syndrome and other hereditary and familial cancer syndromes.

Comunicación de la verdad en medicina: contribuciones desde una perspectiva psicológica / Truth telling in medicine: Psychological perspective

Truth telling in medicine is difficult and stressful. Medical training teaches to mitigate pain and suffering, but death and health deterioration causes feelings of frustration among physicians. Physicians tend to conceal bad news to avoid the suffering caused by such adverse information. However, veracity is an integral part of a respectful relationship and is the basis of confidence between patients and health providers. However, confusing truthfulness with a mere exposure of all the available information is an oversimplification of the problem. Therefore the real issue drifts from "how convenient is to communicate the truth" to "how to share the information with my patient" in a setting in which he can express his feeling and thoughts. Communicating the truth is an ethical imperative. The patient has the right to be informed and the physician must provide this information timely and taking into account the capacity, interest and emotional status of the patients. Therefore prudence, warmth and bioethical reasoning are required for a good medical practice.

Assessing quality of life when planning and evaluating worker notification programs: two case examples.

Notifying workers that they have been placed at risk for serious medical problems may affect their lives in unexpected ways. Although very little evidence supports the fear of notification causing grave psychological problems, more subtle disruptions in quality of life may result. In addition, psychological reactions to notification, such as anxiety or denial, may impede or enhance workers' abilities to process, remember, or act upon the information presented. Measuring how different notification strategies affect quality of life is crucial; this process can enable us to design and select effective strategies that improve, rather than disrupt, the lives of workers and their families. Two preliminary efforts to include consideration of quality of life in planning and evaluating notification programs are described.