Mary V. Rorty

Nursing and Genetics: a feminist critique moves us towards transdisciplinary teams:

Genetic information and technologies are increasingly important in health care, not only in technologically advanced countries, but world-wide. Several global factors promise to increase future demand for morally conscious genetic health services and research. Although they are the largest professional group delivering health care world-wide, nurses have not taken the lead in meeting this challenge. Insights from feminist analysis help to illuminate some of the social institutions and cultural obstacles that have impeded the integration of genetics technology into the discipline of nursing. An alternative model is suggested - the transdisciplinary model - which was developed initially by a nurse and introduced in the 1970s into the delivery of health care and social services for children with developmental disabilities. This holistic model enables all health care professionals to have an equal voice in determining how genetic health care will be globalized.

Rafting the Ethical Rapids

Clinical ethics committees have a long tradition in hospitals, and since 1993 have been required for accreditation by any hospital of more than 200 beds. Their role has typically included assistance with the development and review of policies and guidelines affecting the care of individual patients; education in ethics for the physicians and clinical staff who serve patients; and case consultation on ethical issues that arise in the care of patients. The typical hospital ethics committee is a group of 10 to 30 members, depending upon the size of the institution, comprised of medical care providers, community representatives, ethicists, and chaplaincy who have expressed interest in serving on the committee. Committee members can serve as resources to their clinical services and as conduits of communication between the committee and the institution’s functional units on controversial issues that have ethical implications. The most frequent call on an institutional ethics committee is its function in case consultation. When disagreements arise between clinicians, between different teams who are involved in the care of the same patient, or between clinicians and family members about the plan of care for a particular patient, the ethics committee can provide advice, information or mediation to those struggling with the conflict. Ethics committee recommendations are typically advisory only, with the decisions remaining in the hands of those responsible for the patient’s care. But particular cases can move participants away from the individual level. Clinical cases often have organizational implications. In the course of resolving an individual case, structural problems within the institution often surface, whether staffing issues, problems with unit organization, or the absence of a policy that will provide guidance to clinicians. The resolution of a problematic bedside issue may require an institutional, rather than an individual, solution. And typical clinical ethics concerns, such as privacy and confidentiality of information, communication and disclosure, truth-telling, informed consent or conflicts of interest, often have organizational analogues.1 In the last two decades, the entire healthcare sector has undergone rapid and often confusing changes in hospital organization, reimbursement patterns and care delivery that have placed new stresses on internal organization. In 1995 the Joint Commission on Accreditation of Hospital Organizations added to their conditions for accreditation the requirement that healthcare organizations include an ‘organization ethics’ function in their internal processes (JCAHO, 1995, pp. 95–97). How this requirement should be met remains unspecified, and organizations have responded in various ways. Some organizations have added a separate committee to their ethics program.2 In other hospitals one individual has been designated to assume that role.3 For many, the requirement for ‘organization ethics’ has simply served as a reminder to already-constituted committees that calls for an ethics consult may often represent needs and require responses that extend beyond the initial bedside encounter that prompted the call. Generalizations about what an organization ethics process would look like and how it should be instituted are often empty or ineffectual. But the requirement itself suggests that attention to ethics in institutions requires more than dispute resolution in individual cases. Case studies—instances of how individual committees manage to ride the waves of change that are buffeting healthcare organizations in America (and Canada) today—can offer encouraging examples of how ethics services can thrive in a time of transition.4 This paper presents a case study of how one ethics committee is attempting to meet the ethical demands of the new century. Our committee serves a busy (250) bed children’s hospital affiliated with an academic medical center, and with 30 members is relatively large, with about half of the members present at any given meeting. We typically receive 8-10 formal consults a year, in addition to less-formal “curbside” consults or requests for one or two members of the Committee to attend a patient care meeting. A member of the Committee also routinely attends interdisciplinary rounds in the pediatric intensive care unit and the cardiovascular surgery intensive care unit. Our Committee operates on a ‘moral community’ model: for formal consults, the whole Committee is notified and as many as can attend the resulting meeting with the family and team members.5 Service on the Committee is voluntary and uncompensated, and there is little turnover among our members. An ethics committee that is well integrated into the institution can serve as a barometer or early warning system for developing problems. A change in the number or pattern of consults, such as a rise in the number of consults from a particular unit or service, is often a reflection of a larger problem or conflict within the organization. These are the ethical “canaries in the coal mine” that point to circumstances that may jeopardize the ethical health of the organization. Over the past five years our committee has undertaken several initiatives aimed at addressing organization dilemmas in our institution, and in the process, the role of our committee has evolved beyond case consultation.

Key Points for Developing an International Declaration on Nursing, Human Rights, Human Genetics and Public Health Policy

Human rights legislation pertaining to applications of human genetic science is still lacking at an international level. Three international human rights documents now serve as guidelines for countries wishing to develop such legislation. These were drafted and adopted by the United Nations Educational, Scientific and Cultural Organization, the Human Genome Organization, and the Council of Europe. It is critically important that the international nursing community makes known its philosophy and practice-based knowledge relating to ethics and human rights, and contributes to the globalization of genetics. Nurses have particular expertise because they serve in a unique role at grass roots level to mediate between genetic science and its application to public health policies and medical interventions. As a result, nurses worldwide need to focus a constant eye on human rights ideals and interpret these within social, cultural, economic and political contexts at national and local levels. The purpose of this article is to clarify and legitimate the need for an international declaration on nursing, human rights, human genetics and public health policy. Because nurses around the world are the professional workforce by which genetic health care services and genetic research protocols will be delivered in the twenty-first century, members of the discipline of nursing need to think globally while acting locally. Above all other disciplines involved in genetics, nursing is in a good position to articulate an expanded theory of ethics beyond the principled approach of biomedical ethics. Nursing is sensitive to cultural diversity and community values; it is sympathetic to and can introduce an ethic of caring and relational ethics that listen to and accommodate the needs of local people and their requirements for public health.

The paradoxical placebo.

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Health Care for Old Age: Rights, Duties and Expectations

Eighteenth-century philosopher David Hume appreciated the tranquil and detached quality of the last segment of his life. In contrast, twenty-first-century physician-philosopher Ezekiel Emmanuel fears the arrival of this same period in his life. Emmanuel proposes not to seek curative medical care from the time he reaches age 75. He agrees with Hume that old age is a time of physical and mental decline but devises a different adaptive approach. Instead of abandoning the ambition that has characterized his life, he will abandon life itself. The chapter explores and assesses twenty-first-century conceptual deterrents to Hume’s recommended tranquil detachment. The discussion zeroes in on contemporary conceptual components that are biased against the elderly, the very age group that our current idea of old age should celebrate rather than condemn.

Nursing and genetics: a feminist critique moves us towards transdisciplinary teams

Genetic information and technologies are increasingly important in health care, not only in technologically advanced countries, but world-wide. Several global factors promise to increase future demand for morally conscious genetic health services and research. Although they are the largest professional group delivering health care world-wide, nurses have not taken the lead in meeting this challenge. Insights from feminist analysis help to illuminate some of the social institutions and cultural obstacles that have impeded the integration of genetics technology into the discipline of nursing. An alternative model is suggested - the transdisciplinary model - which was developed initially by a nurse and introduced in the 1970s into the delivery of health care and social services for children with developmental disabilities. This holistic model enables all health care professionals to have an equal voice in determining how genetic health care will be globalized.Genetic information and technologies are increasingly important in health care, not only in technologically advanced countries, but world-wide. Several global factors promise to increase future demand for morally conscious genetic health services and research. Although they are the largest professional group delivering health care world-wide, nurses have not taken the lead in meeting this challenge. Insights from feminist analysis help to illuminate some of the social institutions and cultural obstacles that have impeded the integration of genetics technology into the discipline of nursing. An alternative model is suggested--the transdisciplinary model--which was developed initially by a nurse and introduced in the 1970s into the delivery of health care and social services for children with developmental disabilities. This holistic model enables all health care professionals to have an equal voice in determining how genetic health care will be globalized.