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Laura Weiss Roberts

Publications and source records attributed to Laura Weiss Roberts.

At least 37 records · Page 2Linked to original sources

Ethical issues in the use of genetic information in the workplace: a review of recent developments.

PURPOSE OF REVIEW: In the wake of the Human Genome Project, the pace of genetic discovery has quickened. New genetic tests and other molecular technology have had immediate and wide relevance to American and European workers. These tests have the potential to provide improved workplace safety and protect workers' health, but they also carry the risk of genetic discrimination including loss of employment, promotion, insurance and health care. Ethical safeguards are necessary if the benefits are to outweigh the adverse consequences of genetics in the workplace. RECENT FINDINGS: This review examines the major policy statements issued in Europe and the USA from 2000 to 2005 pertaining to genetic issues in occupational health. Recent findings stress that genetic testing can only be utilized with worker consent and that the workers should control access to genetic information. Such testing is only justified when the information is required to protect the safety of the worker or a third party. The progress of occupational genetic technology should not be permitted to shift the responsibility for a safe working environment from the employer to the employee. Genetic discrimination in all forms is neither supported scientifically nor warranted ethically. SUMMARY: Increasingly, occupational physicians and clinicians treating workers will be faced with potentially stigmatizing genetic information and there is an urgent need for education and research to expand and implement the recommendations of major governmental and professional policy statements.

Editorial↗

Ethical considerations in rural health care: a pilot study of clinicians in Alaska and New Mexico.

To investigate differences in the experiences of rural versus non-rural clinicians, we surveyed caregivers in New Mexico and Alaska regarding ethical aspects of care provision. Consistent with past literature, rural compared to non-rural clinicians perceived patients as having less access to health care resources. They reported more interaction with patients and less awkwardness in relationships with their patients outside of work. Rural clinicians also reported their patients expressed more concern about knowing them in both personal and professional roles, had more concerns over confidentiality, and experienced more embarrassment concerning stigmatizing illnesses. Ethical issues and implications of these results for providing care in rural areas are discussed.

Adult↗

Schizophrenia research participants' responses to protocol safeguards: recruitment, consent, and debriefing.

OBJECTIVE: To examine the perspectives and preferences regarding ethically important aspects of recruitment, consent, and debriefing of people with schizophrenia who volunteered for research protocols. METHOD: A structured interview to assess research-related views of people with schizophrenia was developed and piloted. Data collection occurred at three sites. For this analysis, we examined the subset of responses from schizophrenia patients currently enrolled in a protocol. RESULTS: Data from 28 schizophrenia research volunteers were analyzed. Of these, 22 were men and 11 were voluntary inpatients. Most (n=23) recalled speaking with someone before enrolling in the protocol, and most (n=26) reported trusting the person who told them about it. Participants reported a moderate understanding of their protocols. All but one person (n=27) remembered signing a consent form. Twenty-one volunteers indicated that consent forms are meant to help both the patient and the researcher. Most (n=23) reported making the enrollment decision alone, with 22 making this decision prior to reviewing the consent form. The decision was described as relatively easy. Respondents felt some pressure to enroll, with women experiencing more pressure. Debriefing practices were strongly endorsed by participants. All 28 of the volunteers wished to be informed if a health problem (i.e., "something wrong") was discovered during the protocol. CONCLUSION: The persons living with schizophrenia who were interviewed for this project expressed interesting perspectives and preferences regarding ethically important aspects of recruitment, consent, and debriefing in clinical research that may help guide efforts to make research processes more attuned to participants and merit further inquiry.

Adult↗

The positive role of professionalism and ethics training in medical education: a comparison of medical student and resident perspectives.

OBJECTIVE: To assess the perspectives and preferences of medical students and residents regarding professionalism and ethics education. METHODS: A new written survey with 124 items (scale: "strongly disagree" = 1, "strongly agree" = 9) was sent to all medical students (n=308) and PGY 1-3 residents (n=233) at one academic center. RESULTS: Of the 336 participants (200 students, 65% response; 136 residents 58% response), only 18% found current professionalism and ethics preparation sufficient. Respondents endorsed professionalism (means=7.48 to 8.11) and ethics topics (means=6.56 to 6.87), women more so than men (p<0.05). Respondents preferred clinically- and expert-oriented learning over formal, nontraditional, or independent approaches (p<0.0001). They preferred clinically-oriented assessment methods (p<0.0001), residents more so than medical students (p<0.0001). On several items, psychiatry residents expressed greater receptiveness to professionalism and ethics preparation. CONCLUSIONS: Medical students and residents indicate support for professionalism and ethics educational initiatives, including diverse curricular topics and clinically-attuned assessments.

Adult↗

Schizophrenia patients' and psychiatrists' perspectives on ethical aspects of symptom re-emergence during psychopharmacological research participation.

RATIONALE: Study designs involving medication-free intervals have become the subject of controversy in the current dialogue on the ethics of serious mental-illness research. METHODS: Schizophrenia patients ( n=59; response rate 75%; 48% inpatients) and psychiatrists ( n=70; response rate 83%) responded to ten questions about a hypothetical scenario in which a schizophrenia study participant experienced the re-emergence of serious symptoms during the "wash-out" phase of a psychopharmacological trial. Patients provided their personal views, and psychiatrists gave their personal views and made predictions as to how schizophrenia patients in general would respond. RESULTS: Schizophrenia patients and psychiatrists judged the hypothetical protocol as moderately harmful. Both expressed relatively low likelihood of willingness to participate in the study, given this potential outcome. Schizophrenia patients and psychiatrists found the decision fairly easy. Psychiatrists underestimated the level of harm and overestimated the difficulty of the decision as perceived by schizophrenia patients. Schizophrenia patients acknowledged that the offer of money and request by their doctor or family would increase the likelihood of their participation, and psychiatrists accurately predicted these responses. In hypothetical decisions about the symptomatic study participant, 38% of patients and 39% of psychiatrists said they would allow him to leave the hospital. A majority of both groups (63% and 52%, respectively) indicated that medication should be given despite the study participant's objection. Psychiatrists incorrectly predicted this response, expecting instead that most schizophrenia patients would support the discharge request and few would support involuntary administration of medication. Patients and psychiatrists offered similar reasons for participation decisions but differed in their strategies for handling the situation. CONCLUSION: These findings suggest potential strengths of decisionally capable schizophrenia patients in assessing ethically important design elements of psychopharmacological trials. Implications for informed consent for research, expectations of the therapeutic obligations of clinical investigators, and the role of psychiatric advance directives in psychopharmacological research are outlined.

Adult↗

Ethical considerations in caring for women with substance use disorders.

People living with addiction endure many hardships, and this may be especially true for women who face distinct clinical and significant psychologic and socioeconomic repercussions of addictive disorders and their companion stresses. Clinicians who work with women with addictions are confronted by many challenges, particularly in the care of pregnant and parenting women. The dilemmas faced by patients with addictions and their providers often arise directly from tensions among core ethical principles, from inconsistencies in the way these principles are applied, and from the pervasive effects of stigma. Although difficult issues are to be expected in the arena of substance abuse treatment, consideration of principles of voluntarism, beneficence, respect for persons and justice, confidentiality and truth-telling, and informed consent are invaluable in shaping clinical ethical decision making. Furthermore, proactive steps can be taken to enhance the ethical caliber of care. These steps involve policy-level and systemic actions, such as the development and expansion of programs serving women's unique needs, empiric research into the most effective treatments for women with various disorders, and reexamination of legal and societal stances toward pregnant and parenting women who have addictions. In addition, local and individual steps are needed, including addressing gaps or inherent biases in programs, training counselors and clinicians in effective strategies or counseling styles, and developing awareness of one's own attitudes when dealing with difficult patients and challenging disorders. Such efforts will help ensure that women who have addictions will be cared for in a manner that is respectful, beneficent, compassionate, honest, and just.

Ethics, Clinical↗

Evaluating medical students' skills in obtaining informed consent for HIV testing.

OBJECTIVE: To evaluate fourth-year medical students' abilities to obtain informed consent or refusal for HIV testing through a performance-based evaluation method. DESIGN: Student competence was assessed in a standardized patient interaction in which the student obtained informed consent or refusal for HIV testing. A previously validated 16-item checklist was completed by the standardized patient. A subset was independently reviewed and scored by a faculty member to calculate interrater reliability for this report. Student feedback on the assessment was elicited. SETTING: School of Medicine at the University of New Mexico. PATIENTS/PARTICIPANTS: All senior medical students in the class of 2000 were included. INTERVENTIONS: A 10-minute standardized patient interaction was administered within the context of a formal comprehensive performance assessment. MEASUREMENTS AND MAIN RESULTS: Seventy-nine students participated, and most (96%) demonstrated competence on the station. For the 15 specific items, the mean score was 25.5 out of 30 possible points (range, 13 to 30; SD, 3.5) on the checklist. A strong positive correlation (rs =.79) was found between the total score on the 15 Likert-scaled items and the score in response to the global item, "I would return to this clinician" (mean, 3.5; SD, 1.0). Scores given by the standardized patients and the faculty rater were well correlated. The station was generally well received by students, many of whom were stimulated to pursue further learning. CONCLUSIONS: This method of assessing medical students' abilities to obtain informed consent or refusal for HIV testing can be translated to a variety of clinical settings. Such efforts may help in demonstrating competence in performing key ethics skills and may help ensure ethically sound clinical care for people at risk for HIV infection.

Clinical Competence↗

What is ethically important in clinical research? A preliminary study of attitudes of 73 psychiatric faculty and residents.

The ethical caliber of psychiatric research ultimately rests upon the shoulders of psychiatric clinicians and investigators who perform protocols and are directly responsible for the welfare of study volunteers. Little is known, however, about ethically relevant attitudes of psychiatrists toward human research. Working as part of a larger study, we surveyed all psychiatry faculty and residents at one institution in 1999 regarding the relative importance of 12 elements in the ethical conduct of human research. Responses of 73 participants were analyzed, and three factors emerged: Safeguards and Scientific Merit, Investigator Integrity and Relationship, and Patient Benefit. Safeguards and Scientific Merit, as a set, were the most salient considerations for both psychiatry faculty and residents. We found that residents placed greater importance on all factors and nearly every element than did faculty. Future research is needed to clarify the understanding of the perspectives and priorities of different stakeholders involved in human studies.

Adult↗

Influences upon willingness to participate in schizophrenia research: an analysis of narrative data from 63 people with schizophrenia.

Schizophrenia affects more than 1% of the world's population, causing great personal suffering and socioeconomic burden. These costs associated with schizophrenia necessitate inquiry into the causes and treatment of the illness but generate ethical challenges related to the specific nature and deficits of the illness itself. In this article, we present a systematic analysis of narrative data from 63 people living with the illness of schizophrenia collected through semistructured interviews about their attitudes, beliefs, and experiences related to psychiatric research. In the comments of these individuals, half of whom had had prior personal experience in research protocols, we identified factors influencing openness toward research involvement as well as deterrents that appear to lessen interest in participation. Clear response pattern differences emerged between those with prior research experience and those without such experience. In the discussion, we explore the key findings and outline the implications for safeguards in mental illness research.

Clinical Protocols↗

Ethics and mental illness research.

There are many tasks ahead in the area of ethics and mental illness research. We face unknown challenges in psychiatric genetics projects, studies of psychopharmacological interventions in children, controversial scientific designs (e.g., symptom challenge, medication-free interval), and cross-disciplinary research incorporating goals and methods of health services, epidemiology, and social and behavioral science endeavors. Boundaries between innovative clinical practices and research-related experimentation will become increasingly difficult to distinguish, as will the roles between clinicians, clinical researchers, and basic scientists. Moreover, the institutions and systems in which research occurs are being rapidly and radically revised, raising new questions about oversight responsibilities and standards. Our ability to identify and respond to the ethical questions arising in this uncharted territory will depend on our willingness to self-reflect, to integrate the observations and insights of the past century, to think with great clarity, and to anticipate novel ethical problems that keep company with scientific advancements. It will also depend on data. Empirical study of ethical dimensions of human research is essential to anchor and attune the intuitions and theoretical constructs that we develop. Science and ethics have changed over the past 100 years, as they will over the next century. It is ironic that the ethical acceptability of psychiatric research is so much in question at this time, when it holds so much promise for advancing our understanding of mental illness and its treatment. The tension between the duty to protect vulnerable individuals and the duty to perform human science will continue to grow, as long as ethics and science are seen as separable, opposing forces with different aims championed by different heroes. The profession of psychiatry is poised to move toward a new, more coherent research ethics paradigm in which scientific and ethical issues are recognized as inextricably linked: science as a human activity carries complex ethical meanings and responsibilities, and ethics itself is subject to scrutiny and amenable to scientific inquiry. Building a broader, more versatile, and more effective repertoire of safeguards will be increasingly important, and safeguards, in this view, represent a modest price for the privilege of studying serious illnesses--diseases that cause grave suffering and yet are a source of both vulnerability and strength. In this paradigm, attention to ethics safeguards is no longer understood as a barrier to scientific advancement, but rather as the means by which psychiatric research may be conducted with broad societal support, honorably and, ultimately, with the expectation of bringing benefit to millions of people with mental illness.

Confidentiality↗