Familial genetic risks: how can we better navigate patient confidentiality and appropriate risk disclosure to relatives?

This article investigates a high-profile and ongoing dilemma for healthcare professionals (HCPs), namely whether the existence of a (legal) duty of care to genetic relatives of a patient is a help or a hindrance in deciding what to do in cases where a patient's genetic information may have relevance to the health of the patient's family members. The English case ABC v St George's Healthcare NHS Trust and others considered if a duty of confidentiality owed to the patient and a putative duty of care to the patient's close relatives could coexist in this context. This article examines whether embracing the concept of coexisting duties could enable HCPs to respect duties in line with their clinical judgement, thereby providing legal support and clarity to professionals to allow them to provide the best possible genetics service to both the patient and their family. We argue that these dual duties, framed as a novel, composite duty to consider the interests of genetic relatives, could allow HCPs to exercise and act on their professional judgements about the relative value of information to family members, without fears of liability for negligence or breach of confidence.

A challenge to unqualified medical confidentiality.

Medical personnel sometimes face a seeming conflict between a duty to respect patient confidentiality and a duty to warn or protect endangered third parties. The conventional answer to dilemmas of this sort is that, in certain circumstances, medical professionals have an obligation to breach confidentiality. Kenneth Kipnis has argued, however, that the conventional wisdom on the nature of medical confidentiality is mistaken. Kipnis argues that the obligation to respect patient confidentiality is unqualified or absolute, since unqualified policies can save more lives in the long run. In this paper, I identify the form of Kipnis's argument and present a challenge to it. I conclude that, as matters stand now, a qualified confidentiality policy is the more rational choice.

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.

Decisions of psychiatric nurses about duty to warn, compulsory hospitalization, and competence of patients.

Nurses who attend patients with psychiatric disorders often encounter ethical dilemmas and experience difficulties in making the right decision. The present study aimed to evaluate the decisions of psychiatric nurses regarding their duty to warn third parties about the dangerousness of the patient, the need for compulsory hospitalization, and the competence of patients. In total, 111 nurses working in the field of psychiatry in Turkey completed a questionnaire form consisting of 33 questions. The nurses generally assessed the decision-making competency of the patient correctly. However, their decisions regarding whether the patient should be compulsorily hospitalized and their understanding of their duty to warn/protect were less consistent. A significant relationship was found between the decisions of the psychiatric nurses and their work experience, them having children, and them having postgraduate education in psychiatric nursing. The nurses stated their desire to be part of the team that decided on ethical problems in psychiatry.

How to handle genetic information: a comparison of attitudes among patients and the general population.

BACKGROUND: So far there are no studies comparing the attitudes of patients with hereditary conditions to the attitudes of the general public on how to handle genetic risk information which mutation carriers refuse to disclose to relevant family members. The purpose of the present study was to investigate whether such patients and members of the general public want to be informed about the existence of hereditary conditions within their family, and under which conditions they want healthcare providers to breach confidentiality. METHODS: It was hypothesized that the desire to be informed would be influenced by characteristics of both the disease and the individual. Systematically varying 3 disease characteristics (fatality, penetrance and treatment availability) yielded 8 versions of a questionnaire, which was administered to general population samples in Norway and Sweden (N = 3,207) and to patient samples in both countries (N = 822). Individual differences in uncertainty avoidance, coping style and consideration for future consequences were also assessed. RESULTS AND CONCLUSION: A majority of both patients and the general public want to be informed about the existence of hereditary conditions within their family. However, patients are more positive towards being informed, both with and without the relative's consent, than the general public. The main predictor of the desire to be informed was uncertainty avoidance in both samples.

Someone to talk to. The nurse and the depressed or suicidal older patient.

Depression and suicide are two major mental health problems affecting older adults, this country's fastest growing population. As such, more nurses must become educated on assessing their geriatric patients for the signs and symptoms of each. These subjects are very difficult to breach and often are not discussed unless rapport has been established through nurses' use of positive, therapeutic communication. When confronted, professional nurses are placed in the difficult situation between maintaining the patient's privacy or confidentiality, respecting their federally protected health information, and the duty to care for the patient. Open discussion between the nurse and other members of the treatment team is vital to identifying the issue and providing older patients with the mental health care they require.

HIV diagnosis disclosure: stigma management and stigma resistance.

This article reports diagnosis disclosure decision comments arising serendipitously in five focus group discussions with 34 HIV-infected New Yorkers over age 50. Three overarching disclosure themes demonstrate the complexity of diagnosis disclosure decision-making: (a) hiding or selectively disclosing, or stigma management; (b) partial disclosure because of the perception of partial control of the information; and (c) widespread or complete voluntary diagnosis disclosure, representing stigma resistance. Social workers and other human services practitioners should remember the diversity in the HIV population, the aging population, and the HIV-positive aging population. Experiences of HIV stigma and choices about diagnosis disclosure and stigma management or resistance are individual, reciprocal, and dynamic.

It's been a privilege: advising patients of the Tarasoff duty and its legal consequences for the federal psychotherapist-patient privilege.

State laws modeled on Tarasoff v. Regents of the University of California require psychotherapists to warn potential victims or law enforcement when treating dangerous patients who make serious threats of harm to another person. In practice, many psychotherapists advise their patients who make such threats about their duty under these Tarasoff-model laws. Although they are not required to make these advisories by law, psychotherapists generally assume that they also have a concomitant ethical duty to advise their patients that such threats will not be kept confidential, as their communications normally would be. This Note looks at how these advisories affect the status of privilege for subsequent threatening statements relayed to a psychotherapist. It explores the opposing views in the federal circuit courts regarding whether such an advisory precludes the existence of privilege for subsequent statements, or whether the advisory operates as a waiver to the privilege. This Note argues that threats communicated to a psychotherapist after an advisory about a psychotherapist's Tarasoff duty cannot be considered privileged if the patient intended for the threat to be passed on to a third party. Psychotherapists must now be aware of the possible legal consequences regarding the patients' diminished expectation of confidentiality and lack of privilege following such advisories. In order to act in their patients' best interest, psychotherapists should educate themselves about the scope of a Tarasoff duty in their applicable states and should consider alternative intervention techniques that could reduce dangerous patients' risk of harm. Psychotherapists should continue to follow professional ethical guidelines about advising patients of the limits of confidentiality, but implement techniques that evidence the patients' true intent about confidentiality, in order to bolster the patients' possible privilege claims later on and minimize harm to the treatment relationship.

[Beyond the diagnosis of a genetic disease, the question of informing the relatives]. / Au-delà du diagnostic d'une maladie génétique, la question de l'information de la parentèle.

The examination of a person's genetic characteristics is not a classic diagnostic. It concerns the gene pool of an entire family. It is valid in the present and may affect some part of the future. The diseases that it reveals, sometime very serious ones, may or may not be treated. But genetic advice allows sometimes to preventing some of these diseases. The 2004 Bioethics Law makes the provision that in case a serious genetic anomaly is diagnosed during the examination of a person's genetic characteristics, the medical doctor informs the person or its legal representative of the risks that his silence could cause to the potentially concerned family members as long as prevention measures or care can be offered to them. For these reasons, besides the specificity of the diagnostic for the person directly concerned, there is also the question of the right of other people, like family members, to be informed of the diagnostic. As such, there is an ethical conflict between medical confidentiality owed to each patient and the duty of information. The pharmacist must know the medical confidentiality rules that frame this information. He must also know the different patient attitudes and must be able to encourage him to inform his family because the future if not the life of others may depend on this information.

Confidentiality versus duty to inform--an empirical study on attitudes towards the handling of genetic information.

We set out to investigate whether potential relatives want to be informed about the existence of hereditary conditions within their family and under which conditions they want healthcare providers to breach confidentiality to inform them. We hypothesized that the willingness to be informed about a hereditary condition in the family would be influenced by characteristics of the disease and by individual characteristics. Surveys were administered to a Norwegian random sample (N = 2,400) to a Swedish random sample (N = 1,200), and to a Norwegian student sample (n = 607). Eight different disease scenarios were constructed, systematically varying three disease characteristics: fatality, penetrance, and availability of treatment. Results show that a majority of participants wished to be informed about the existence of a hereditary disease within their family. The desire to be informed and the acceptability of breaches of confidentiality were predicted by the treatability of the disease, uncertainty avoidance, and age, but not by self-efficacy or worry.

[Truth disclosure in medicine: psychological perspective]. / Comunicación de la verdad en medicina: contribuciones desde una perspectiva psicológica.

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.

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.