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Biomedical subjects

P R Wolpe

Publications and source records attributed to P R Wolpe.

13 recordsLinked to original sources
PubMed1999

Commercialization of BRCA1/2 testing: practitioner awareness and use of a new genetic test.

It was our purpose to determine the characteristics of practitioners in the United States who were among the first to inquire about and use the BRCA1 and BRCA2 (BRCA1/2) genetic tests outside of a research protocol. Questionnaires were mailed to all practitioners who requested information on or ordered a BRCA1/2 test from the University of Pennsylvania (UPenn) Genetic Diagnostics Laboratory (GDL) between October 1, 1995 and January 1, 1997 (the first 15 months the test was available for clinical use). The response rate was 67% of practitioners; 54% (121/225) were genetic counselors, 39% (87/225) were physicians or lab directors. Most physicians were oncologists, pathologists, or obstetrician/gynecologists, but 20% practiced surgery or internal or general medicine. Fifty-six percent (125/225) had ordered a BRCA1/2 test for a patient; most of the rest had offered or were willing to offer testing. Of those who had offered testing, 70% had a patient decline BRCA1/2 testing when offered. Practitioners perceived that patients' fear of loss of confidentiality was a major reason for declining. Nearly 60% of practitioners reported that their patients had access to a genetic counselor, but 28% of physicians who ordered a BRCA1/2 test reported having no such access, despite the GDL's counseling requirement. The proportion of physicians reporting no access to genetic counselors for their patients increased from 22.4% in the first half of the study to 50% in the last half. Many practitioners have an interest in BRCA1/2 testing, despite policy statements that discourage its use outside of research protocols. Practitioner responses suggest that patient interest in testing seems to be tempered by knowledge of potential risks. An apparent increase in patient concern about confidentiality and inability to pay for testing could indicate growing barriers to testing. Although most practitioners reported having access to counseling facilities, perceived lack of such access among an increasing proportion of practitioners indicates that lab requirements for counseling are difficult to enforce and suggests that an increasing proportion of patients may not be getting access to counseling.

Awareness↗
PubMed1998

Updating protections for human subjects involved in research. Project on Informed Consent, Human Research Ethics Group.

For decades, all federally funded research involving human subjects has been subject to regulations that require the informed consent of the subject and oversight by the local institution. These regulations last underwent major revision in 1981 and have remained unchanged despite significant changes in the nature of clinical science, the financial sources of research support, and the institutional environment in which clinical research is conducted. In the intervening years, doubt has evolved as to whether the regulations currently in place adequately protect the welfare and rights of research subjects in today's clinical research environment and whether the costs, in terms of time, bureaucracy, and delay, are justified by the level of protection afforded. The Human Research Ethics Group, administered by the Center for Bioethics at the University of Pennsylvania Health System, extensively reviewed the status of existing human subjects protections with the aim of making recommendations to improve and reform the regulations. Here, we present recommendations constituting a consensus of the group members for reform in 3 key areas: protecting subject populations with special needs and vulnerabilities, oversight by institutional review boards, and regulatory policy.

Advisory Committees↗
PubMed1997

Ethical issues in umbilical cord blood banking. Working Group on Ethical Issues in Umbilical Cord Blood Banking.

OBJECTIVE: Banking umbilical cord blood (UCB) to be used as a source of stem cells for transplantation is associated with a set of ethical issues. An examination of these issues is needed to inform public policy and to raise the awareness of prospective parents, clinicians, and investigators. PARTICIPANTS: Individuals with expertise in anthropology, blood banking, bone marrow transplantation, ethics, law, obstetrics, pediatrics, and the social sciences were invited to join the Working Group on Ethical Issues in Umbilical Cord Blood Banking. EVIDENCE: Members were assigned topics to present to the Working Group. Following independent reviews, background materials were sent to the Working Group. CONSENSUS PROCESS: Individual presentations of topics at a 2-day meeting were followed by extensive group discussions in which consensus emerged. A writing committee then drafted a document that was circulated to the entire Working Group. After 3 rounds of comments over several months, all but 1 member of the Working Group agreed with the presentation of our conclusions. CONCLUSIONS: (1) Umbilical cord blood technology is promising although it has several investigational aspects; (2) during this investigational phase, secure linkage should be maintained of stored UCB to the identity of the donor; (3) UCB banking for autologous use is associated with even greater uncertainty than banking for allogeneic use; (4) marketing practices for UCB banking in the private sector need close attention; (5) more data are needed to ensure that recruitment for banking and use of UCB are equitable; and (6) the process of obtaining informed consent for collection of UCB should begin before labor and delivery.

Biomedical Research↗
PubMed1994

The dynamics of heresy in a profession.

It has been suggested that the term 'heresy' be rehabilitated to describe challenges to ideology in a profession. However, the term has been used in a variety of ways, impairing its descriptive utility. Using a variety of examples of potential heretical ideas in modern science and medicine, this paper tries to carefully define heresy and distinguish it from other forms of ideological challenge to a profession, such as challenges to knowledge products and challenges to authority. A dramaturgical approach is then used to try and describe the stages of heretical conflict in a profession.

Philosophy, Medical↗
PubMed1993

Predicting compliance of dual diagnosis inpatients with aftercare treatment.

OBJECTIVE: Patients with comorbid diagnoses of a substance use disorder and at least one other axis I mental disorder have low rates of compliance with aftercare. The purpose of the study was to identify predictors of noncompliance among dual diagnosis inpatients. METHODS: Characteristics of 48 dual diagnosis inpatients were examined. Compliance was defined as visiting the aftercare site at least three times. RESULTS: Persons with a diagnosis of cocaine dependence were significantly more likely to be noncompliant with aftercare than those with a diagnosis of cocaine abuse. Patients with a discharge diagnosis of any type of depression were more likely to be noncompliant than those without such a diagnosis. During inpatient treatment, patients who were subsequently noncompliant with aftercare showed more erratic patterns of privilege loss and gain. CONCLUSIONS: Knowledge of factors related to noncompliance with aftercare may lead to better intervention with dual diagnosis patients.

Adult↗
PubMed1993

Using awareness of religious factors to enhance interventions in consultation-liaison psychiatry.

Religion plays an important role in the lives of most Americans and often influences the ways patients react to medical illness. However, the religious aspects of patients' lives are often ignored or only superficially explored by consultation-liaison psychiatrists. Building on an existing typology, the authors use six dimensions of religious experience to discuss approaches to incorporating religious factors in the psychiatric evaluation and treatment of the hospitalized medical patient; the dimensions include religious beliefs, participation in religious rituals, and affiliation with a religious community. Case examples illustrate how these approaches can enhance the work of the consultation-liaison psychiatrist and improve the patient's coping ability.

Adaptation, Psychological↗
PubMed1990

The holistic heresy: strategies of ideological challenge in the medical profession.

Heresy is a neglected term in sociology. Yet insofar as science and the professions demand a conformity to basic concepts of ideology and practice, certain types of dissent may best be described as heresy. In this paper, heretical movements are discussed, and heresy is defined [8. Zito G. V. Social. Anal. 44, 123-130, 1983] as an attempt to challenge an orthodoxy for the right to control a discourse. The difficult position of the heretic as a challenger to an entrenched orthodoxy is described, particularly the attempt of heretics to assert their allegiance to the discourse itself while the orthodoxy attempts to portray them as traitors or apostates. It is argued that a four part strategy is necessary for a successful heretical challenge: the heretic must portray the discourse as in crisis, must provide an alternative ideology to rescue the discourse, must legitimize their ideology through appeal to a reframed historical myth, and must portray the orthodoxy as a betrayer of the discourse. The holistic movement in medicine is used as an exemplar to show how holistic physicians use this four part strategy.

Holistic Health↗