Gwen Anderson

Storytelling: A Holistic Foundation for Genetic Nursing

The article discusses the need for a paradigm shift in how genetic nurses think about genetic information and genetic testing. It conceptualizes a theoretical model to depict the relationships among storytelling, holism, and genetic nursing practice. Four themes are discussed to explain why storytelling is necessary for clinical genetics: knowing the patient as a whole person, honoring the preciousness of personhood and the essence of humanness, uncovering power imbalances that inhere in therapeutic relationships, and listening to peoples values and beliefs that affect decision making. The benefit of storytelling for developing and disseminating knowledge in genetic nursing is examined.

A multiplicity of roles for genetic nursing: building toward holistic practice.

Nursings unique contribution to human genetics is holism. There are many roles for basic and advanced practice nurses involved in genetics. Describing these roles makes it easy for nurses to learn more about genetic nursing and helps promote collaboration among professionals. Education for nurses about genetics helps foster greater nursing participation in human genetics. The goal is for nurses to be informed about genetics so that they can better understand people as whole persons whose growth and development, human response patterns, and biopsychosocial processes are affected by and have an effect on human DNA.

Redressing Policy in Cancer Genetics: Moving toward Transdisciplinary Teams:

Cancer genetics involves bringing together a team of health care providers with expertise in both oncology and genetics in which advanced practice nurses play a critical role. Cancer genetic risk counseling programs are exemplary models for future risk assessment clinics in other clinical specialties such as neurology, cardiology, oncology, endocrinology, pediatrics, or gerontology, just to name a few. The authors claim that cancer genetics programs, as the forerunner of genetic science in all clinical settings, need to clearly articulate how teams of health care professionals can collaborate across disciplinary boundaries and avoid hierarchical power imbalances in unidisciplinary, multidisciplinary, and interdisciplinary models of practice. They examine potential pitfalls when a traditionally hierarchical ‘old genetics’ model is used in a setting in which the new genetics requires a comprehensive transdisciplinary team approach to practice.

Genetics, Nursing, and Public Policy: Setting an International Agenda

In the last decade of the 20th century, government sponsored and private-sector research endeavors in genetics have unveiled remarkable new knowledge that has the potential to improve human health on a global scale. The purpose of this article is threefold. The authors (a) draw attention to accomplishments achieved thus far in setting policies for genetic nursing, (b) recommend a holistic agenda for advancing genetic nursing education policies nationally and internationally, and (c) recommend essential components of policy development that depict nursing’s interest in genetic concerns globally. The authors encourage nurses worldwide to participate in health, social, ethical, and public policy deliberations related to genetics.

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.

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.

State of the Science: Social, Psychological, and Ethical Nursing Research in Genetics

Integrative reviews of the literature are generally understood as one way scholars and students develop new knowledge within the discipline of nursing (Ganong 1987). This literature review integrates published nursing research pertaining to the social, psychological, and ethical implications of genetics for patients and for nursing practice. A synthesis of this literature enables the entire nursing profession to understand where we have arrived and where we are going (Feldman 1971) in terms of incorporating genetic science into nursing practice. My goal is to provide concrete suggestions for journal editors and leaders in continuing education who disseminate this knowledge to nurses. An understanding of where the cutting edge of nursing research lies will help nursing leaders envision how they can promote future growth and development of genetic knowledge for and about nursing. They will better understand how to present this knowledge to nurses who are already interested in genetic information and how to appeal to nurses who think that genetics does not relate to practice. The first goal of this review is to identify and analyze genetic nursing research published in English that directly addresses the social, psychological, and ethical impact of genetics on nursing, patients, families, and communities. The second goal is to conceptually map the state of the science and the art of genetic nursing research based on a systematic mode of inquiry. The third goal is to interpret and infer generalizations about how this body of research relates to and expands extant nursing knowledge.

After the sequencing of the human genome: new opportunities for nurses abound

Two premier scientific journals have published articles that describe preliminary analysis of the now complete ‘draft’ of the human genome sequence (AGAGTTCTG).1,2 The philosophical controversy at the heart of these simultaneous publications is that Nature reported on the publicly funded version of the genome produced by over 2500 scientists in the international public sequencing consortium that promotes free and unlimited public access to the genome via the Internet. Science reported the progress achieved by Celera, a privately funded version of the human genome that was constructed using computational algorithms to model genes and sequence DNA. In contrast, Celera promotes a commercial model of restricting access until key elements of the genome are patented.3 The most significant discovery is that there may be as few as 30 000 proteincoding genes in the human genome, which is considerably less than the earlier prediction of 80 000–100 000. With the gene count for other species such as the fly (13 000), the round worm (18 000) and the house plant (26 000) being only oneto two-thirds of humans (p. 15)4 this discovery challenges the assumption that humans are, in comparison, more evolved and thus highly sophisticated because we have more genes. As simple as it sounds, this idea shatters the prevailing dogma that there is a unidirectional flow from a single gene coding sequence to transcription of an mRNA that assembles one protein substance per gene, which functions either normally or abnormally and determines whether a person is healthy or diseased. The deepest ramification of this discovery is a shift from the long-privileged view that human beings are made up of constituent parts whose properties explain simple and complex interactions that can be summed together in order to explain normal or abnormal human biological functioning. The landmark discoveries reported in these two journals help us to see beyond a reductionistic doctrine by pointing out that the key to our uniqueness as humans is our complexity and our holism, not more genes. We are more complex than the sum of our genes because ‘more proteins are encoded per gene in humans than in other species’ (p. 820).5 This explains why the emphasis on ‘genomics’ is shifting into a new field called ‘proteomics’, which is exploding.6 Globally, biomedical researchers are devising a plan not only to identify, localize and characterize large sets (or families) of proteins but also to determine their activities, functions, interactions and responses to a multiplicity of natural and man-made chemical compounds.7 What actually gives humans their uniqueness is a fascination that can be delved into even more deeply by epidemiologists who gather, map and compare the vast repertoire of single nucleotide variations or polymorphisms that for the most part make one person slightly different from another or identify a new ‘disease gene’.4 All of this science translates and trickles down to a fervent Reports 473

State of the Art and Science of Knowledge Development in Genetic Nursing

Since the early 1980s, the medical science of human genetics has found acceptance in standards of assess ment and intervention in modern health care systems around the world. Genetic tests were once performed for rare genetic diseases; however, there has been a shift from the traditional genetics services to a new realization that genetics plays some component in nearly all human illness except possibly trauma, according to Francis Collins, MD, PhD, Director of the National Human Genome Research Institute (personal communication, 17 July 1996). Despite this shift toward a genetics paradigm in health care (Anderson, Monsen, Prows, Jenkins, & Tinley, in press), the discipline of nursing remains slow to incorporate genetics content into nursing education at all levels (Donaldson 1997). Furthermore, the need to create new nursing knowledge for this rapidly emerging nursing specialty has not been fully realized by nurse theoreticians, nurse researchers, nursing faculty, or practicing nurses. Consequently, it seems appropriate and timely to address the following questions on a national level. What is the state of the art and science of genetic nurs ing as we approach the new millennium? How can a small cadre of genetic nursing experts facilitate national recognition and value for the impact of genet ics on nursing practice and nursing’s potential to genetic health care services? Who among the nursing leadership have the power to create change in the entire discipline? Who will accept the challenge of dis seminating genetic nursing knowledge as a national agenda? Nurse editors and leaders in continuing education have national credibility and authority; and within their roles, they influence professional practices, advance education, and promote research priorities. They already operate within national education and research infrastructures, and they have the ability to influence policy formation and the evolution of nurs ing knowledge. Professional journals are repositories for new knowledge in any discipline. Editors and peer review ers are responsible, in part, for shaping knowledge in the discipline. The Nursing Organization Liaison Forum (NOLF) gathers nursing specialty organizations that affiliate with the American Nurses Association (ANA). NOLF comprises a large number of the nation’s nurses, nearly all of whom are in clinical practice, education, and/or research roles. ANA and NOLF comprise nearly half of the nation’s 2.6 million nurses (Dickenson-Hazard 1998) and provide most of the continuing education programming to this population. Nursing leaders in continuing education are key decision makers for selecting and presenting new informa tion about health care technologies and setting practice standards for using these in clinical practice. Both groups of nursing leaders lift the discipline’s knowl edge base to new levels by publishing and/or present ing new nursing research, theoretical discussions, and critical reviews that guide clinical practice, new mod els for delivering and evaluating services, and public health policy—all of which are founded on new dis coveries about human health and illness, made by nurse and nonnurse scientists (ANA 1995). The nearly 2.6 million practicing nurses in the United States depend on these two groups of nursing

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.