Respect for the developmentally disabled and forgoing life-sustaining treatment

A developmentally disabled person should be treated at all times as a unique individual and not as some anonymous "disabled person." The developmentally disabled should not be subjected to invasive medical treatment that is unduly burdensome or nonbeneficial, or be forced to endure a quality of life not meaningful to them as individuals. They have a right to refuse or accept treatment that a surrogate must exercise on behalf of each individual in a responsible and careful manner. Three cases and a preliminary approach to the ethical analysis of decisions to allow developmentally disabled persons to die by forgoing medical treatment are offered. The "best interests" of a developmentally disabled individual, properly understood, can serve as a useful and ethically defensible standard for determining the ethical propriety of surrogate decision making about forgoing life-sustaining medical treatment of the disabled.     

Group interventions for patients with cancer and HIV disease: part IV. Clinical and policy recommendations

Group interventions have assumed a growing role in primary prevention and supportive care for cancer and HIV disease. Earlier sections of this Special Report examined empirical findings for these interventions and provided recommendations for future research. The current section offers brief recommendations for service providers, policymakers, and stakeholders. Group services now occupy an increasingly prominent place in primary prevention programs and medical settings. In previous sections of this Special Report (Sherman, Leszcz et al., 2004; Sherman, Mosier et al., 2004a, 2004b) we examined the efficacy of different group interventions at different phases of cancer or HIV disease, considered characteristics of the intervention and the participants that might influence outcomes, and discussed mechanisms of action. Methodological challenges and priorities for future research were highlighted. In this, the final section, we offer brief recommendations for service providers, policymakers, and other stakeholders. We consider some of the barriers that constrain use of empirically-based group interventions and note how these programs might be implemented more widely and effectively.     

Psychological factors in hiv testing among sexually transmitted disease clinic patients: An exploratory study

Abstract

Substantial numbers of persons at risk for HIV infection do not seek HIV testing and factors influencing testing decisions are not well understood. To identify psychological characteristics of persons who remain unwilling to receive HIV testing, we surveyed patients of an inner-city sexually transmitted disease (STD) clinic (n = 181). Participants completed an anonymous survey and were grouped on the basis of HIV testing history and compared on measures of testing perceptions, attitudes, and decision making influences. Results showed that untested participants feared testing and had a sense of not knowing if they needed to be tested. In contrast, participants who were getting tested believed that testing would help them feel better about their health. Results also showed that participants lacked accurate information about some HIV testing procedures. We conclude that identifying concerns which inhibit seeking HIV testing can be useful in developing effective methods of promoting HIV testing.     

Qualifying Confidentiality Obligations

Objectives : To test the range of beliefs regarding the ethics of testing, in resource poor settings, new therapies that are less efficacious but more affordable and feasible than the best current therapeutic standard.

Design : Using a web-based survey, we presented a hypothetical scenario proposing to test a therapy for HIV disease ("therapeutic inoculation") known to be less efficacious than highly active antiretroviral therapy (HAART). Respondents evaluated various trial designs as ethical or unethical.

Participants : 604 subscribers to two listservs for individuals interested in international health research ethics.

Main outcome measures : Proportion of respondents endorsing trials testing this "substandard" therapy, and proportion endorsing placebo-controlled trials.

Results : There were 215 respondents from 47 countries. Forty-five percent of respondents were from low or middle income countries; 96% devoted at least some time to research activities; and 75% had "some" or "considerable" research experience in developing countries. Of respondents, 97% (95% CI 94.7 to 99.4) endorsed testing therapeutic inoculation, without HAART, in patients with HIV disease; 86% (95% CI 81.4% to 90.7%) endorsed testing against placebo. Sixty-eight percent explicitly endorsed principles where the standard of care for subjects in clinical trials is determined by local, not universal, standards. There were no differences in responses based on respondent education-level or the income-level of their country of citizenship.

Conclusion : There was broad agreement that a therapy of potential local benefit may be tested, even when that therapy is known to be inferior to the standard of care in wealthy countries. Most agreed that a placebo control may be used in some circumstances.     

Teaching About Genetic Testing Issues in the Undergraduate Classroom: A Case Study

Educating undergraduates about current genetic testing and genomics can involve novel and creative teaching practices. The higher education literature describes numerous pedagogical approaches in the laboratory designed to engage science and liberal arts students. Often these experiences involve students analyzing their own genes for various polymorphisms, some of which are associated with disease states such as an increased risk for developing cancer. While the literature acknowledges possible ethical ramifications of such laboratory exercises, authors do not present recommendations or rubrics for evaluating whether or not the testing is, in fact, ethical. In response, we developed a laboratory investigation and discussion which allowed undergraduate science students to explore current DNA manipulation techniques to isolate their p53 gene, followed by a dialogue probing the ethical implications of examining their sample for various polymorphisms. Students never conducted genotyping on their samples because of ethical concerns, so the discussion served to replace actual genetic testing in the class. A basic scientist led the laboratory portion of the assignment. A genetic counselor facilitated the discussion, which centered around existing ethical guidelines for clinical genetic testing and possible challenges of human genotyping outside the medical setting. In their final papers, students demonstrated an understanding of the practice guidelines established by the genetics community and acknowledged the ethical considerations inherent in p53 genotyping. Given the burgeoning market for personalized medicine, teaching undergraduates about the psychosocial and ethical dimensions of human gene testing seems important and timely, and introduces an additional role genetic counselors can play in educating consumers about genomics.     

A Review of the Institute of Medicine’s Analysis of using Chimpanzees in Biomedical Research

We argue that the recommendations made by the Institute of Medicine’s 2011 report, Chimpanzees in Biomedical and Behavioral Research: Assessing the Necessity, are methodologically and ethically confused. We argue that a proper understanding of evolution and complexity theory in terms of the science and ethics of using chimpanzees in biomedical research would have had led the committee to recommend not merely limiting but eliminating the use of chimpanzees in biomedical research. Specifically, we argue that a proper understanding of the difference between the gross level of examination of species and examinations on finer levels can shed light on important methodological and ethical inconsistencies leading to ignorance of potentially unethical practices and policies regarding the use of animals in scientific research.     

Policy Recommendations for Carrier Testing and Predictive Testing in Childhood: A Distinction That Makes a Real Difference

The genetic testing of children raises many ethical concerns. This paper examines how five position statements from Canada, UK and USA, which present guidelines for good practice in this area produce different recommendations for carrier testing and predictive testing. We find that the genetic information generated through carrier testing is routinely presented as less serious than that generated from predictive testing. Additionally, the reproductive implications of predictive testing are also routinely erased. Consequently, the papers argue strongly against predictive testing but advise caution against carrier testing in somewhat weaker terms. We argue that these differences rest on assumptions about the status of reproduction in people’s lives and on an ethical stance that foregrounds the self over others. We propose that questioning the crude and sharp distinction between carrier and predictive testing in principle may enable practitioners and parents/families to make more nuanced decisions in practice. Parts of this work have been presented in the 1st International CESAGen Conference, London, 2004, and Genetics and Society Meetings, Wales.     

Dreams,Memories, Reflections by C. G. Jung

Abstract

Group interventions have assumed a growing role in primary prevention and supportive care for cancer and HIV disease. Earlier sections of this Special Report examined empirical findings for these interventions and provided recommendations for future research. The current section offers brief recommendations for service providers, policymakers, and stakeholders.

Group services now occupy an increasingly prominent place in primary prevention programs and medical settings. In previous sections of this Special Report (Sherman, Leszcz et al., 2004; Sherman, Mosier et al., 2004a, 2004b) we examined the efficacy of different group interventions at different phases of cancer or HIV disease, considered characteristics of the intervention and the participants that might influence outcomes, and discussed mechanisms of action. Methodological challenges and priorities for future research were highlighted. In this, the final section, we offer brief recommendations for service providers, policymakers, and other stakeholders. We consider some of the barriers that constrain use of empirically-based group interventions and note how these programs might be implemented more widely and effectively.     

Cystic Fibrosis Prenatal Screening in Genetic Counseling Practice: Recommendations of the National Society of Genetic Counselors

For over a decade, prenatal screening for cystic fibrosis (CF) has been considered a model for the integration of genetic testing into routine medical practice. Data from pilot studies and public policy discourse have led to recommendations by some professional organizations that CF screening should be offered or made available to pregnant women and their partners, and to couples planning a pregnancy. It is crucial that genetic counselors gain thorough understanding of the complexities of CF and the implications of positive test results, so that they may serve as a reliable, educated referral base and resource for health care providers and their patients. While not all pregnant women will be referred for genetic counseling prior to CF carrier testing, genetic counselors often will be asked to counsel clients after they have a positive test result, or who are found to be at increased risk. Genetic counselors can play an important role in providing accurate and current information as well as support for patients informed decisions. These recommendations were created by a multicenter working group of genetic counselors with expertise in CF and are based on personal clinical experience, review of pertinent English language medical articles, and reports of expert committees. The recommendations should not be construed as dictating an exclusive course of management, nor does the use of such recommendations guarantee a particular outcome. These recommendations do not displace a health care providers professional judgment based on the clinical circumstances of a particular client.     

Objectivity in ethics

In this paper I have tried to clarify the meaning of two very different sets of characteristics which philosophers have had in mind when they claimed that ethical terms were objective. I gave a very tentative answer to the question whether it is true to say that, in any of the distinguished senses, ethical statements are objective. Lastly, I indicated how the failure to make the distinction I draw was responsible for a number of confusions and unnecessary difficulties. More precisely, in (1) I defined the first set of the characteristics in question, which together I have called solidity; in (2) I give reasons why it is misleading to claim that ethical statements are solid and also misleading to claim they are not; in (3) I defined the second set of these characteristics, namely, proper contentiousness and proper complexity; in (4) I explained what I thought were the fundamental differences between these two sets of characteristics; in (5) I suggested that the solidity of an expression is normally a good reason for holding that the expression is properly contentious and properly complex; in (6) I claim that the failure to understand (4) and, therefore, also (5) leads to the following errors: (a) that, if an expression is solid, it must be properly contentious and properly complex; that, if an expression is non-solid, it must be either properly contentious and properly simple, or properly non-contentious. (5) That, if an expression is properly contentious and properly complex, it must be solid; if it is properly contentious and properly simple or if it is properly non-contentious, then it must be non-solid; and lastly in (7) I have mentioned some common reasons for holding that ethical expressions have one or the other of the above-mentioned characteristics.     

"HIV testing is so gay": the role of masculine gender role conformity in HIV testing among men who have sex with men

Men who have sex with men (MSM) account for more than half of all new cases of HIV infection in the United States. Yet, many MSM are unaware of their HIV serostatus. Consistent with research indicating that gender role conformity impacts health behaviors, this study examined how masculine norms may influence HIV testing among MSM in the United States. Data from 170 self-identified MSM (age M = 46.45, SD = 12.18) of self-reported negative or unknown HIV serostatus living in the United States were used in this study. About half (52%) of participants reported that they had been tested for HIV within the past 12 months; 48% reported that they had not. Logistic regression was used to examine the association between domains of masculine gender role conformity and HIV testing within the past 12 months, controlling for number of sexual partners in the last 12 months. The masculine norm of heterosexual self-presentation (i.e., desire to be perceived by others as heterosexual) was negatively associated with HIV testing (B = -0.74, SE B = 0.36, O.R. = 0.48, 95% CI [0.24, 0.96]), after controlling for the effect of number of sexual partners. Psychologists and other health professionals may remain mindful of potential implications of HIV testing among MSM, including potential for MSM to view HIV testing as an "outing" procedure.     

Confining Choices: Should Inmates' Participation in Research be Limited?

Historically, prisoners in the United Stateshave served as an inexpensive and readilyavailable source of human subjects forresearch. Coinciding with the civil rightsmovement, however, was an emerging conceptionof prisoners' rights that led to the NationalCommission for the Protection of Human Subjectsof Biomedical and Behavioral Research beingcharged with investigating the use of prisonersas research subjects. The recommendations thatevolved and the subsequent guidelines that havebeen implemented by the Department of Healthand Human Services significantly curtail theuse of prisoners as research subjects. Whilethese measures are designed to protect inmatesfrom the abuses of the past, of particularconcern to many health care officials isexclusion of inmates from experimental HIV/AIDSand hepatitis treatments. This paper addresseswhether the vulnerability of prisoners in theUnited States due to their incarceration issufficient to prohibit them from participationin clinical trials that offer the possibilityof life-saving treatment. It first outlinesthe evolution in moral thinking that has led tolaws broadly prohibiting prisoners frombiomedical research studies and then analyzescases in the law to develop ethical argumentsin support of the view that prisoners should beallowed to participate in clinical trials. Theconclusion is that prisoners should be allowedto participate in such trials.     

Routine screening: informed consent, stigma and the waning of HIV exceptionalism

The Centers for Disease Control and Prevention (CDC) recently recommended that HIV screening should become routine for all adults in the United States. Implicit in the CDC proposal is the notion that pre-test counseling would be more limited than at present, and that written informed consent to screening would no longer be required. If widely implemented, routine testing would mark a tremendous shift in the US HIV screening strategy. There are a number of considerations used to determine what screening tests should be routine, and HIV fits the bill in almost every regard. Yet the stigma associated with HIV infection remains, making the CDC's recommendation highly controversial. Will minimizing requirements for pre-test counseling and special written informed consent lead to unexpected or unwanted HIV testing, or do these stringent counseling and consent requirements needlessly scare people away? Will widespread and routine testing be associated with declining stigmatization, or will it drive some patients away from seeking desperately needed health care? These are high stakes questions, and we're about to find out the answers.     

Elder Abuse: Ethical and Related Considerations for Professionals in Psychology

Elder abuse presents difficult ethical considerations that the field of psychology has yet to sufficiently address. As demographics and sociocultural factors shift in the coming decade, this deficit in ethical competence may become an increasingly serious problem. Although legal definitions of elder abuse lack uniformity and clarity, there is much room for improvement in the field of psychology. Ethical considerations most relevant to professionals in psychology draw heavily on the principles of beneficence and nonmaleficence and respect for people's rights and dignity. Professional standards of competence, discrimination, informed consent, privacy and confidentiality, and cooperation with other professionals are also critical in these considerations. A number of recommendations are made, centering around the needs for more education, frank discussion, and empirical examination of the complexities of elder abuse.     

Essential Elements of Genetic Cancer Risk Assessment, Counseling, and Testing: Updated Recommendations of the National Society of Genetic Counselors

Updated from their original publication in 2004, these cancer genetic counseling recommendations describe the medical, psychosocial, and ethical ramifications of counseling at-risk individuals through genetic cancer risk assessment with or without genetic testing. They were developed by members of the Practice Issues Subcommittee of the National Society of Genetic Counselors Familial Cancer Risk Counseling Special Interest Group. The information contained in this document is derived from extensive review of the current literature on cancer genetic risk assessment and counseling as well as the personal expertise of genetic counselors specializing in cancer genetics. The recommendations are intended to provide information about the process of genetic counseling and risk assessment for hereditary cancer disorders rather than specific information about individual syndromes. Essential components include the intake, cancer risk assessment, genetic testing for an inherited cancer syndrome, informed consent, disclosure of genetic test results, and psychosocial assessment. These recommendations should not be construed as dictating an exclusive course of management, nor does use of such recommendations guarantee a particular outcome. These recommendations do not displace a health care provider's professional judgment based on the clinical circumstances of a client.     

Traditional Healing as Indigenous Knowledge: Its Relevance to HIV/AIDS in Southern Africa and the Implications for Counselors

This article integrates the results of several culture-based studies conducted over the past decade. Specifically, links are made between the continued relevance of the African traditional healer's corpus of knowledge, the efficacy of the healer's cultural authority, and the need for HIV/AIDS-related strategies and interventions that are culturally sensitive, especially counseling. Results of an initial investigation of traditional healing in Lesotho, Swaziland, and Zimbabwe are integrated with more recent research in Botswana and Namibia. Findings from these studies are meshed with preliminary results of an ongoing investigation of the contextual influences and cultural factors associated with the spread of HIV/AIDS in the southern African region. Outcomes of the combined investigations have supported further examination of traditional healing as an indigenous knowledge system, of its relevance to HIV/AIDS, and of its significance to professional counselors in Africa. Related recommendations are offered for consideration by those working within HIV/AIDS systems of intervention.     

The National Commission on AIDS

A decade after the first cases were recognized in the United States, AIDS continues to vex policymakers and fascinate the public. It has been said that AIDS acts as a prism, refracting a spectrum of controversial topics. For bioethicists, these topics include: equity in the allocation of resources for treatment and research; forgoing life-sustaining care and proxy decision making; informed consent in the context of HIV testing and screening; the ethical duties of health care workers to provide care for persons with HIV disease; and competing obligations of health care professionals to patients and to third parties who may be put at risk.     

BOOK REVIEW

In this brief note, we respond to Gottlieb and Lasser's (2001/this issue) critical commentary on our work on narrative research ethics. We argue that their concern for privileging voices needs to be balanced against the risk of exploiting some research participants, that conflicts of interest are best resolved through appropriately prioritizing ethical principles and in consultation with others, and that the researcher's ability to protect participants from harm can be enhanced through appropriate clinical training and access to clinical expertise. We welcome Gottlieb and Lasser's specific recommendations for ethical practice in narrative research and encourage further ethical reflection by other researchers in this area.