Oncology nurses play a large role in the field of genomics.The subject of genetics and personalized medicine is near and dear to my heart, as I spent seven years of my professional career in the field. Many changes have occurred since the early 1990s, when the genetic revolution began.
August 1, 2008, marked the retirement of Dr. Francis Collins, director of the National Human Genome Research Institute. Under Collins's leadership, the Human Genome Project was completed in April 2003, resulting in the complete sequencing of the human genome. Collins should be acknowledged for recognizing early on that this information would have significant ethical, legal, and social implications (ELSI ELSI Ethical, Legal and Social Implications (of Human Genome Project)
ELSI East London Somali Initiative (UK) ). He ensured that as part of the project, funds were budgeted to address those concerns. Of note is nursing's contribution to ELSI investigations.
Oncology nurses are a pivotal link between research discoveries that affect cancer care and their successful adoption to optimize health. A number of ONS activities and initiatives help to illustrate nursing's role in helping patients and the public understand the broad implications of these discoveries.
ONS has a vibrant Cancer Genetics Special Interest Group (SIG) that serves as a resource for members. During the 33rd Annual Congress, the SIG presented a session on taking a family history. With the use of a pedigree and a few key questions, oncology nurses can link genetic advancements to patients and families who might benefit from them.
Consumers have expressed concern that genetic information might be used against them by health insurers and workplaces. Such fear has created obstacles to use of genetic services (i.e., genetic testing) and participation in clinical research. After many years of hard work, including advocacy efforts by many ONS members, the Genetic Information Nondiscrimination Act This article documents a proposed statute that is being considered.
Information may change rapidly as the bill progresses. (GINA GINA - Generic Interactive Application. An application framework based on Common Lisp and OSF/Motif, designed to simplify the construction of graphical interactive applications. ) was passed. GINA is a good first step to protecting consumers from genetic discrimination, but it will need to be improved upon for the future because not all areas are covered.
In 1996, the American Medical Association American Medical Association (AMA), professional physicians' organization (founded 1847). Its goals are to protect the interests of American physicians, advance public health, and support the growth of medical science. , the American Nurses Association American Nurses Association,
n.pr professional organization of registered nurses created to encourage high standards in nursing care, pro-mote nursing as a profession, and lobby Congress for issues of concern to nurses. , and the National Human Genome Institute established the National Coalition of Health Professional Education in Genetics (NCHPEG NCHPEG National Coalition for Health Professional Education in Genetics ). This organization of organizations seeks to develop resources for health professionals. Patricia Kelly, RN, MS, AOCN AOCN Advanced Oncology Certified Nurse
AOCN Administrative Operating Company Number [R], coeditor of the Cancer Genetics SIG Newsletter, represents ONS at NCHPEG.
In 2005, ONS endorsed the Essential Nursing Competencies for Genetics and Genomics (www.genome.gov/Pages/Careers/HealthProfessionalEducation/ geneticscompetency.pdf), which establishes the minimum competency expected of every nurse. Personalized health care requires that nurses be adequately prepared to assist consumers in the interpretation of very complex details that influence healthcare choices.
ONS continues to evaluate strategies to educate members about genomics and how to integrate the nursing competencies into its educational activities. Nurses can play a key role in the integration of genetic information into the lives of patients and families.
Online Resources for Genetics and Genomics
ONS Position on the Role of the Oncology Nurse in Cancer Genetic Counseling: www.ons.org/publications/positions/CancerGeneticCounseling.shtml
ONS Web Site Genetics Clinical and Patient Resource Areas: www.ons.org/clinical/prevention/genetics/index.shtml
CDC See Control Data, century date change and Back Orifice.
CDC - Control Data Corporation Public Health Genomics ''This article or section is being rewritten at
Public Health Genomics is the utilization of genomics information to benefit public health. This is visualized as more effective personalised preventive care and disease treatments with better specificity, targeted to the : www.cdc.gov/genomics
Genetics Home Reference: http://ghr.nlm.nih.gov
International Society of Nurses in Genetics: www.isong.org
Physician Data Query[R] Cancer Information Summaries on Genetics: www.cancer.gov/cancerinfo/pdq/genetics
National Coalition for Health Professional Education in Genetics: www.nchpeg.org
Nurses' Role in Pharmacogenetics Pharmacogenetics Definition
Pharmacogenetics is the study of how the actions of and reactions to drugs vary with the patient's genes.
Description and Pharmacogenomics: www.cincinnatichildrens.org/ed/clinical/gpnf/ce/skill/default.htm
Personalized Health Care Initiative: www.hhs.gov/myhealthcare
Secretary's Advisory Committee on Genetics, Health, and Society Report: Realizing the Potential of Pharmacogenomics: www4.od.nih.gov/oba/sacghs/reports/SACGHS_PGx_Report.pdf
[By Paula T. Rieger, RN, MSN, AOCN[R], FAAN FAAN
Fellow of the American Academy of Nursing ]