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page 1 | page 2 | page 3 | page 4 | page 5 | page 6 | page 7 | page 8 | page 9 | page 10 | page 11 | table of contents | references | test Ethical Considerations and Challenges Maximizing the utilization of genetic information to benefit individuals and families will require a social environment where that information is not used against them (Giarelli & Jacobs, 2000). Although considerable attention has been paid to the potential for misuse of genetic information, significant issues will increasingly present themselves to both professionals and consumers of genetics care. A survey of Oncology Nursing Society Genetics Special Interest Group members and members of ISONG explored those ethical issues of most concern and most frequently encountered (Gaul, Cassells, Lea, Calzone, & Jenkins, 1999). The ethical issue of protection of patient confidentiality, both in general practice and as a result of genetic screening, was the issue of most concern to respondents and was increasingly encountered. Issues of potential disruptions in family relationships resulting from genetic screening as well as adequate understanding and sufficient provision of information to make informed decisions were also identified as ethical issues of moral concern. Nurses are being challenged to identify and evaluate strategies that will assist them to effectively address such ethical dilemmas in their clinical practice (Rieger & Pent, 1999). An ethical assessment framework (EAF) may be valuable as a decision-making method that can assist nurses to logically address ethical dilemmas (Cassells, Gaul, Lea, Calzone, & Jenkins, 1999). Education about such models in nursing programs is needed to guide nurses through a logical progress of analysis of genetic issues. The EAF process includes identification of the ethical issue, gathering of sufficient information about the problem, assessing potential actions/options, applying ethical justification, determining available resources, and then planning. implementing, and evaluating decision outcomes for individuals and their families. Nurses have also participated in national bodies working to design ethical national policy that impacts society. The Secretary’s Advisory Committee on Genetic Testing (SACGT) is such an example. SACGT is a working group that was chartered in 1998 to advise the Department of Health and Human Services (DHHS) on the many issues raised by the development and use of genetic tests. Nurses have been visible and active in the planning of the public consultation process, the design, and the review of recommendations. Nurses have already provided testimony to SACGT offering views from nursing organizations on the major issues including medical, scientific, ethical, legal, and social aspects related to access and quality of genetic tests. Genetics education has implications for the influencing of a wide spectrum of policy issues. Nurses have the ability to provide practical, ethically sound, and effective information to prepare them to be active participants in the policy arena. Policies that affect patients, such as what is included in informed consent about genetic testing, need to be considered. Policies that guide the collection, recording, and use of genetic information will need input from nurses. Policies that provide the necessary safeguards to promote successful utilization of this new technology in society offer opportunities for nurses to voice concerns about those items of most importance to them both personally and professionally. Genetics discoveries offer exciting options for the health care of the future, but only if handled appropriately. This necessitates that nurses focus on both risks and benefits of genetics information to assure quality outcomes for society. The historical perspective of genetics services may offer little to the health care professional of the future for designing education, clinical, and research programs to meet the future demands of consumers as this is uncharted territory. Nurses, however, have begun to identify and address the challenges and opportunities resulting from integration of genetics into health care of all individuals and families (Pesut, 1999). At times the work may feel overwhelming and slightly confusing. On the other hand, this work captures the imagination and offers excitement, potential, and opportunity. The challenge for nursing is to recognize the difference that can be made if we all pool our resources and approach this initiative as a professional body. Think of the impact that nursing can have for the care of all persons if adequate genetics education, accessible services that integrate genetics, and ethical standards are established proactively.
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