Participants' understanding of the process of psychological research: informed consent

Sixty-five undergraduates participating in a wide range of psychological research experiments were interviewed in depth about their research experiences and their views on the process of informed consent. Overall, 32% of research experiences were characterized positively and 41% were characterized negatively. One major theme of the negative experiences was that experiments were perceived as too invasive, suggesting incomplete explication of negative aspects of research during the informed consent process. Informed consent experiences were viewed positively 80% of the time. However, most of the participants had a limited view of the purpose of informed consent: less than 20% viewed the process as a decision point. Results suggest a number of common pitfalls to standard informed consent practices that have not generally been recognized. Results are discussed in terms of both ethical and methodological implications. Suggestions for improving the informed consent process are also provided.     

Obtaining informed consent for HIV antibody testing: the decision making process

All patients referring themselves for HIV antibody testing must receive pre-test counselling and must give their informed consent before testing can proceed. All patients being referred by their doctors for HIV antibody testing must also receive pre-test counselling and must give their informed consent before testing can proceed, except in very unusual circumstances. This paper is written primarily for medical and nursing staff who are considering referring a patient for testing and it is particularly relevant to those staff working in the field of mental health. This paper draws on professional guidelines and suggests that staff use a two-part decision making process. In the first part die referrer decides whether there are substantial clinical grounds for needing the test result immediately. If there are, the referral is made for pre-test counselling and testing, for example at the local Genito-Urinary Medicine (GU) clinic. In the second part experienced AIDS counsellors try to enable the patient to decide whether or not to proceed. If the patient is not able to understand or make a decision the AIDS counsellors, in consultation with other staff, will decide whether to proceed. Whatever the decision, it should be respected by professional staff.     

Altruistic discourse in the informed consent process for childhood cancer clinical trials

Scholars have debated the role that altruistic considerations play--and should play--in recruitment and decision-making processes for clinical trials. Little empirical data are available to support their various perspectives. We analyzed 140 audiotaped pediatric informed consent sessions, of which 95 (68%) included at least one discussion of how participation in a cancer clinical trial might benefit: 1) the pursuit of scientific knowledge generally; 2) other children with cancer specifically; and 3) "the future" and other vaguely defined recipients. Clinicians initiated most (80%) of these discussions of altruism. The enrollment rate of children in the clinical trial was high (83%) overall, but not higher among children whose parents were involved in an altruism-oriented discussion. These findings suggest that: (1) clinicians invoke a spectrum of altruistic considerations rather than a single monothematic notion of altruism, and (2) the effect of altruistic considerations on subsequent enrollment decisions is marginal. While further research on this topic is warranted, bioethical debate should strive to reflect the diversity of altruistic discourse in clinical research encounters and to place this discourse in the context of other, including nonaltruistic, considerations.     

Technology in guidance: a conceptual overview

Guidance technology has the potential to enable counselors to reach new goals and to accomplish old goals in new ways. The appropriate guidance use of technology, however, is not just one of designing machines but rather of discovering how to use technology to realize counselors' personal and societal goals in particular settings. The future of guidance could well depend on the capacity of the counseling profession to utilize technology effectively.     

Informed consent: An overview

Over the past 25 years, obtaining informed consent for the performance of many medical procedures has become part of the practice of medicine. As opposed to the “duty to warn” that is enforced by the law, informed consent should be a cornerstone of a fully collaborative decision-making process, the elements of which are presented in this paper. The responsibility for this process rests upon health care institutions and financing arrangements, as well as upon physicians and courts. In response to emergencies, patient preferences, and public interests, the consent process is justifiably abbreviated. However, as presently articulated, the consent process treats communication too simplistically, is distorted by the way it is enforced in litigation, is inattentive to social justice issues, and is not integrated into the moral commitment of physicians.     

Managed care and informed consent

Arguments for efficiency in health care delivery have been used to support some level of withholding of information about available treatment options from patients in managed care systems. To the extent that such arguments prevail, they may necessitate changes in the established understanding of and commitment to informed consent and the disclosure of information to patients.     

Senile dementia and informed consent

Senile dementia in the elderly is a prevalent condition which requires ongoing medical treatment. This disease causes a deterioration of cognitive processes and, consequently, it is likely to impair the capacities required to give informed consent to needed medical care. However, a diagnosis of senile dementia does not necessarily indicate that the afflicted individual is incompetent. The means of assessing competency in dementia patients and their likely impairments according to five standards is described in this paper. Recommendations for obtaining consent from the competent dementia patient are made and mechanisms for providing special protection to the incompetent patient in the consent process are discussed.     

Informed consent for the diagnosis of brain death: a conceptual argument

Background

This essay provides an ethical and conceptual argument for the use of informed consent prior to the diagnosis of brain death. It is meant to enable the family to make critical end-of-life decisions, particularly withdrawal of life support system and organ donation, before brain death is diagnosed, as opposed to the current practice of making such decisions after the diagnosis of death. The recent tragic case of a 13-year-old brain-dead patient in California who was maintained on a ventilator for over 2 years illustrates how such a consent would have made a crucial difference.

Methods

Conceptual, philosophical, and ethical analysis.

Results

I first consider a conceptual justification for the use of consent for certain non-beneficial and unwanted medical diagnoses. I suggest that the diagnosis of brain death falls into this category for some patients. Because the diagnostic process of brain death lacks the transparency of traditional death determination, has a unique epistemic structure and a complex risk-benefit profile which differs markedly from case to case, and presents conflicts of interest for physicians and society, I argue that pre-diagnostic counseling and informed consent should be part of the diagnostic process. This approach can be termed as “allow cardiac death”, whose parallel logic with “allow natural death” is discussed. I also discuss potential negative impacts on organ donation and health care cost from this proposal and offer possible mitigation. I show that the pre-diagnostic counseling can improve the possibility for well-thought-out decisions regarding organ donation and terminating life-support system in cases of hopeless prognosis. This approach differs conceptually from the pluralism of the definition of death, such as those in New Jersey and Japan, and it upholds the Uniform Determination of Death Act.

Conclusions

My intention is not to provide an instant panacea for the ongoing impasse of the brain death debate, but to point to a novel conceptual ground for a more pragmatic, and more patient- and family-centered approach. By enabling the family to consent to or decline the diagnostic process of brain death, but not to choose the definition of death, it upholds the current legal definition of death.

     

Client preferences for informed consent information

Thirty-five current therapy clients, 47 former clients, and 42 college students with no therapy experience rated 27 items in terms of importance for inclusion in informed consent discussions. The current and former client samples rated information about inappropriate therapeutic techniques, confidentiality, and the risks of alternative treatments as most important, and information about the personal characteristics of the therapist and the therapist's degree as least important. The results of this study provide evidence for differential informed consent disclosure practices.