A m e r i c a n A c a d e m y o f N u r s i n g

AAN News & Opinion

281NURSING OUTLOOK NOVEMBER/DECEMBER 2001

A s health care professionals, we standat the crossroads of a new age in our

field. Discoveries emanating from theHuman Genome Project and basicscience research are announced almostdaily and are transforming practice at anequally rapid rate. In the words of DrFrancis Collins, Director of the NationalHuman Genome Research Institute,“Genetic discoveries will impact everynook and cranny of our practice.”1

The Human Genome Project is aninternational research program estab-lished in 1990 through collaborationbetween the National Institutes ofHealth and the US Department ofEnergy. The National Human GenomeResearch Institute, an institute of theNational Institutes of Health, adminis-ters the project. The goal of this projectis to analyze the structure of humanDNA and to determine the locationsand sequences of human genes. InFebruary 2001, the Human GenomeProject international consortium an-nounced the publication of a draft se-quence and initial analysis of the humangenome—the genetic blueprint for ahuman being. Although a definitivecount of human genes must undergofurther experimental and computationalanalysis, scientists now estimate thathuman beings have some 30,000 to35,000 genes in their genomes, anumber much smaller than the 50,000to 100,000 genes originally estimated.

It is anticipated that the “decoding” ofthe human genome (ie, understandingthe complete set of genes) will unravel

countless mysteries of disease at themolecular level. Within the next century,advances in biotechnology and geneticengineering, coupled with discoveriesfrom the Human Genome Project, willmake possible the diagnoses and treat-ment of disease that were only dreamedof a few years ago. As proteins are identi-fied and their functions are determined,scientists ultimately will deduce how agene mutation can send altered instruc-tions for the production of a protein,which in turn may not function correctlyand, hence, cause disease.2

The improved understanding ofcancer at a molecular level serves as aparadigm of how these discoveries aretransforming the management of onedisease and how they ultimately willaffect the entire specialty of oncologynursing. The Oncology Nursing Society(ONS), a professional organization ofnearly 30,000 members, is dedicated topromoting excellence in cancer nursingand high-quality cancer care.3 TheONS has undertaken a strategic effortto educate its members in this area andto influence legislation and policy thatwill affect both patients and profes-sional practice as oncology nursesassume new roles, such as providingcancer genetic counseling.

ONS has undertaken a strategic effortto influence legislation and policy thatwill affect both patients and professionalpractice in the realm of cancer genetics.The Secretary of Health and HumanServices created the Secretary’s AdvisoryCommittee on Genetic Testing (SACGT)

to make recommendations on publicpolicy concerning this expanding science.3At a series of public forums, ONS andother nursing organizations provided testi-mony regarding genetics. To strengthennursing’s position and present a unifiedvoice, information was shared among theorganizations that were planning to testify,such as the American Academy of Nursing(AAN) and the International Society ofNurses in Genetics (ISONG). On severaloccasions, the ONS has provided input tothe SACGT through both oral and writtentestimony to reinforce the need for nurseswho are knowledgeable and skilled withrespect to cancer-related issues and care;this is an important consideration whendecisions are made concerning minimumcompetencies for the provision of cancergenetic counseling services.

Legislation to protect patients againstdiscrimination related to their geneticstatus by insurers is supported in theONS Health Policy Agenda. Throughcollaboration with ONS’s health policyassociates, the Society has sent letters ofsupport on this pending legislation in the107th Congress. This action has broughtopportunities to testify at congressionalhearings on the issue of discriminationrelated to genetic status.

ONS has an infrastructure of specialinterest groups (SIGs) that provideexpertise on a variety of oncology-relatedtopics. The Cancer Genetics SIG, withmore than 90 members, is very activewithin the Society and frequently servesas a resource for the ONS Board ofDirectors on matters related to cancer

Planning for the Future—The Integration of Genetics Into Cancer Care

Paula Trahan Rieger, RN, MSN, CS, AOCN, FAANPresident, Oncology Nursing Society

A A N P u b l i c a t i o n A d v i s o r y C o m m i t t e e : Suzanne Feetham, PhD, RN, FAAN, Jaqueline Fawcett,PhD, RN, FAAN, Mary Haack, PhD, RN, FAAN, Deborah Koniak Griffin, EdD, RN, FAAN, Mary Stainton, MS, RNC, FAAN,Antonia Villarruel, PhD, RN, FAAN, Suzanne Bakken, DNSc, RN, FAAN, and Carole Kenner, DNS, RNC, FAAN, chair