Volume 7, Issue 2, June 2003   
     
Message from the Coordinator
Preparing to Take Cancer Genetic Testing to the Next Level



Agnes Masny, RN, MPH, MSN, CRNP
Philadelphia, PA
ac_masny@fccc.edu


Is the Cancer Genetics SIG ready for the Genomic Era?

The celebration of “The Genome—50 Years of DNA” was marked in April. The National Institute of Nursing Research sponsored one of the events that focused on the implications of genetics for nursing research. Every professional nursing organization is looking to integrate genetic information into nursing practice. The Cancer Genetics SIG membership has taken important steps to incorporate genetics into the cancer risk assessment process. The far-reaching impact of the Human Genome Project, HapMap Project, and the Cancer Gene Anatomy Project, however, will take the cancer genetic field far beyond cancer risk assessment. Continued research related to predisposition testing will identify other polymorphisms in populations that affect the penetrance of genes such as BRCA1 and BRCA2. Testing for panels of many genes will become more commonplace in cancer predisposition testing. Using genetic markers in body fluids and tissue may change the way cancer screening is performed. Molecular characteristics of solid tumors will provide more information regarding prognosis and treatment option

 
 

Special Interest Group Newsletter  June 2003
 
   


Message from the Coordinator
Preparing to Take Cancer Genetic Testing to the Next Level


Agnes Masny, RN, MPH, MSN, CRNP
Philadelphia, PA
ac_masny@fccc.edu

Is the Cancer Genetics SIG ready for the Genomic Era?

The celebration of “The Genome—50 Years of DNA” was marked in April. The National Institute of Nursing Research sponsored one of the events that focused on the implications of genetics for nursing research. Every professional nursing organization is looking to integrate genetic information into nursing practice. The Cancer Genetics SIG membership has taken important steps to incorporate genetics into the cancer risk assessment process. The far-reaching impact of the Human Genome Project, HapMap Project, and the Cancer Gene Anatomy Project, however, will take the cancer genetic field far beyond cancer risk assessment. Continued research related to predisposition testing will identify other polymorphisms in populations that affect the penetrance of genes such as BRCA1 and BRCA2. Testing for panels of many genes will become more commonplace in cancer predisposition testing. Using genetic markers in body fluids and tissue may change the way cancer screening is performed. Molecular characteristics of solid tumors will provide more information regarding prognosis and treatment options. Pharmacogenetic screening prior to cancer treatment may lead to identification of specific patients predisposed to drug toxicity or poor drug response. Studies already are under way that explore genetic alterations in drug metabolizing enzymes or receptor expression. 5-FU and 6-mercaptopurine are two examples.

The question we have asked other oncology nurses is applicable for the Cancer Genetics SIG: “Are we ready for the genomic era?”

Will we be ready to help other nurses understand the genetic mechanisms that influence tumor initiation and progression? Are we ready to take on cancer genetic testing beyond BRCA1, BRCA2, and HNPCC? Will we consider pharmacogenetic screening prior to treatment as part of the role of nurses involved in cancer risk assessment and counseling? Will we be able to support patients struggling with a new genetic understanding of themselves or their tumors? Will we be able to provide guidance to ONS when faced with population or societal issues emerging from genetics? These are only a few of the challenges that we will face. Fortunately, we will face these challenges together and, hopefully, chart a genetics path for our SIG and oncology nurses.
 
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Special Interest Group Newsletter  June 2003
 
   


Message from the Editor
Newsletter Highlights the Accomplishments of Its Members


Judie Much, RN, MSN, APN-C, AOCN®
New Brunswick, NJ
muchjk@umdnj.edu


This month, instead of offering a feature article, we are highlighting some of the accomplishments of the membership. Several publications by members have become part of my “core” literature in cancer genetics nursing. An annotated bibliography is included in this issue if you wish to read these selections.

We also celebrate the appointment of our Coordinator, Agnes Masny, RN, MPH, MSN, CRNP, to the Secretary’s Advisory Committee on Genetics, Health, and Society (SACGHS). The formal meeting announcement is contained in this newsletter, and all of us should go to Washington, DC to see the functioning of this committee.

News from NHGRI focuses on the GARD (Genetics and Rare Diseases) Information Center. Thanks to another member, Jean Jenkins, PhD, RN, FAA, for providing our SIG with the electronic copy of the NHGRI newsletter.

In other CAG SIG news, I will be stepping down as your newsletter editor, but we are lucky to have Marilyn Kile, RN, MSN, AOCN®, APR, volunteer to fill the position. Marilyn can use help, so if you would like to serve as co-editor along with her, please let me know. Marilyn will take over in May. I will assist her in getting up to speed while I prepare to be the next SIG coordinator. I would like to thank the membership for your kind words about the newsletters and for indicating your faith in me by electing me as your coordinator-elect.

 
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Special Interest Group Newsletter  June 2003
 
   


Recent Publications by Members


Calzone, K.A., Jenkins, J., & Masny, A. (2002) Core competencies in cancer genetics for advanced practice oncology nurses. Oncology Nursing Forum, 29, 1327–1333.
Authors conducted a survey of experts (N = 37) utilizing the Delphi Technique in order to reach consensus on core competencies in cancer genetics for advanced practice nurses (APNs) in oncology. Recommendations are given for competencies and knowledge in each of the five domains (direct caregiver, coordinator, consultant, educator, and researcher) of APN practice and in professional attitudes.

Domcheck, S.M., Eisen, A., Calzone, K., Stopher, J., Blackwood, A., & Weber, B. (2003). Application of breast cancer risk prediction models in clinical practice. Journal of Clinical Oncology, 21(4), 593–601.
Authors differentiate between population-based models, which estimate the risk of developing breast cancer over time, and probability models, which estimate the likelihood of detection of a mutation being found in a specific individual or family. The context in which each model was developed is described and advantages and disadvantages of each model are discussed. Application of risk assessment tools is discussed.

Grady, P., & Collins, F. (2003). Genetics and nursing science: Realizing the potential. Nursing Research, 52(2), 69.

Greco, K.E., & Mahon, S.M. (2003) Genetics nursing practice enters a new era with credentialing. The Internet Journal of Advanced Nursing Practice, 5(2). Retrieved May 8, 2003, from http://www.anes.saga-med.ac.jp/ispub/journals/ijanp.htm
The authors describe the credential for genetic nursing practice provided through the International Society of Nurses in Genetics (ISONG), the rationale for credentialing, and provide a discussion of nurses’ responsibilities in a genetic clinical practice.

Jenkins, J., & Collins, F. (2003). Are you genetically literate? American Journal of Nursing, 103(4), 13.


Loud, J.T., Peters, J.A., Fraser, M., & Jenkins, J. (2002). Applications of advances in molecular biology and genomics to clinical cancer care. Cancer Nursing, 25(2), 110–122.
Discoveries from the genetic “revolution” have rapidly changed the substance of nursing and medical practice. The authors categorize the advances in a broad overview of the ways in which advances in genomics and molecular biology have changed practice from prevention to treatment of cancers.

 
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Special Interest Group Newsletter  June 2003
 
   


New Genetics Publications Are Available


Nurses today need to have a basic understanding of genetics and its effect on cancer care. ONS now offers two new resources—Genetics in Oncology Practice: Cancer Risk Assessment and Genetics Cancer Care Guide—to increase nurses’ knowledge of this cutting-edge field and helps them to incorporate a genetic focus into their everyday nursing practice.

Genetics in Oncology Practice is a “must have” for nurses who care for patients with cancer. It contains practice competencies, required knowledge, and recommendations for training for each level of practice.

This practical, user-friendly publication includes information on

  • The impact of genetics on nursing practice
  • Performing an assessment from a genetic perspective
  • Identifying a genetic problem
  • The effect of genetic information on treatment, prognosis, and outcome
  • Providing genetic counseling and education
  • Handling genetic information responsibly
  • Identifying appropriate referrals and resources.
Sold in a package with Genetics in Oncology Practice: Cancer Risk Assessment, the Genetics Cancer Care Guide will teach nurses how to provide ongoing support and care to patients and families with genetic-related health concerns or those undergoing cancer therapy that is influenced by genetic information. The guide has a sectional format so nurses can set their pace, either for individual or group learning. They can use the entire kit for longer workshops or training programs or break it into sections for shorter sessions. The kit also includes a variety of exercises and case studies that can be used for training and in-services. The kit contains the following.
  • General information about genetic aspects of cancer from initiation through progression and management
  • Nursing interventions related to genetics at each point of the cancer continuum
  • Exercises in genetic self-awareness and ethical issues
  • Web-based and other resources in genetics for nurses and their patients
Genetics in Oncology Practice is available to ONS members for $52 and to nonmembers for $68. A package containing Genetics in Oncology Practice and the Genetics Cancer Care Guide is available for $55 for members and $75 for nonmembers. For more information or to place an order, contact ONS Customer Service or visit ONS Online at www.ons.org.

 
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Special Interest Group Newsletter  June 2003
 
   


Cancer Genetics SIG Coordinator Named to SACGHS


The inaugural meeting of the Secretary’s Advisory Committee on Genetics, Health, and Society (SACGHS) will be held from June 11–12 in Washington, DC. Agnes Masny, RN, MPH, MSN, CRNP, CAG SIG Coordinator, has been named to sit on the committee.

The first meeting of SACGHS will involve a review of the Committee’s mandate, brief reports from the SACGHS ex-officio agencies, presentations on the status and future directions of genetic technologies, discussions of current issues, a period of public comments, and the formulation of the SACGHS work agenda. An agenda will be posted online approximately two weeks prior to the meeting.

Viewing options: Seating in the meeting room will be quite limited and will be provided on a first-come-first-serve basis. An overflow room will be available at the hotel, and the meeting will be Web cast. The Web cast will be available on the day of the meeting.

Pre-registration: Click here to pre-register or call Abbe Smith of Technical Resources International at 301-897-7423.

Meeting location: Wyndham in Washington DC, 1400 M Street, NW Washington, DC 20005. Phone: 202-729-1700. Click here for directions or to make online lodging reservations.

For more information about the committee and to obtain up-to-date information about the meeting, please visit http://www4.od.nih.gov/oba/sacghs.htm.

 
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Special Interest Group Newsletter  June 2003
 
   
News from the National Human Genome Research Institute





Genetic and Rare Diseases Information Center Is Established
Keeping pace with the ever-expanding body of scientific knowledge about genetic and rare diseases can be an uphill battle for many healthcare professionals. Even for those who manage to stay abreast of the latest developments, a major challenge remains: finding the time and resources needed to clearly convey such information to patients and their families.

Now, the National Institutes of Health (NIH) is offering healthcare professionals free assistance on both fronts in the form of its recently established Genetics and Rare Diseases (GARD) Information Center. Funded by NIH’s National Human Genome Research Institute (NHGRI) and the Office of Rare Diseases (ORD), the center provides healthcare professionals and their patients with immediate access to experienced information specialists who can furnish current and accurate information about more than 6,000 genetic and rare diseases.

Since it was established in February 2002, GARD has responded to nearly 4,000 inquiries on rare and genetic diseases. The requests include many inquiries from physicians, nurses, and other healthcare professionals, as well as patients and their families directed to the site by healthcare professionals.

To date, most users have contacted GARD by e-mail, GARDinfo@nih.gov, or by calling their toll-free number: 888-205-2311 or 888-205-3223. Requests also can be sent to GARD by fax: 240-632-9164 or mail: P.O. Box 8126, Gaithersburg, MD 20898-8126.
People requesting information receive a response from GARD within four to seven business days, on average. However, depending on the nature of the inquiry, the turnaround time for inquiries from healthcare professionals often is much faster. For example, an urgent request may receive a response within 24 hours or even immediately.

However, GARD’s success is reflected by far more than statistics. Healthcare professionals who have taken advantage of the services offered by the center have responded enthusiastically. Feedback from healthcare professionals plays a critical role in GARD’s ongoing effort to fine tune the services that it provides.
GARD information specialists provide inquirers with current, accurate, and authoritative information by drawing from public domain sources, including reliable Web sites, brochures, articles, and organizations.

Although patients and their families often contact GARD seeking direct referrals to healthcare professionals or asking for treatment or medical management suggestions, it is important to emphasize that GARD does not directly provide this type of information. Instead, GARD information specialists direct the inquirer to resources that might give treatment information (e.g., journal articles, clinical trials). GARD also does not provide genetic counseling or offer diagnostic testing, but will point the inquirer to appropriate sources of information about such services.

In addition to furnishing healthcare professionals with accurate, up-to-date information on genetic and rare diseases, GARD can also serve as a timesaving tool to help such professionals reinforce or expand upon genetic and rare disease information that they may have already provided to patients.

The GARD Information Center has resource materials available to healthcare professionals and their patients.
  • Genetic and Rare Diseases Information Center Brochure—provides basic information about genetic and rare diseases, a brief description of services offered by GARD, and contact information. PDF version of the brochure can be viewed at www.genome.gov/Health/GARD
  • “About GARD” card. Contact information for GARD’s information specialists. PDF version can be viewed at www.genome.gov/Health/GARD

 
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Special Interest Group Newsletter  June 2003
 
   
New Reference Work to Help Scientists With Treatment Strategies

Jean Jenkins PhD, RN, FAAN
Bethesda, MD
jean.jenkins@nih.gov



I recommend that you frequently visit the NHGRI Web site (www.genome.gov) to keep informed of events happening in genomics research. Some of the items that were recently added include:

ENCODE. The ENCyclopedia Of DNA Elements (ENCODE) is a new project with a long-term goal of creating a comprehensive encyclopedia of functional elements encoded in the human DNA sequence. ENCODE is designed to identify and locate precisely all of the protein-coding genes, non-protein coding genes, and other sequence-based functional elements contained in the human DNA sequence. The project’s aim is to create a comprehensive understanding of a noncontiguous 1% of the genome, with the thought that the techniques thus established could then be applied to the remaining 99%. Creating this reference work will help scientists fully utilize the human sequence, gain a deeper understanding of human biology, predict potential disease risk, and stimulate the development of new strategies for the prevention and treatment of disease.

The National Coalition for Health Professional Education in Genetics (NCHPEG) Web page has a new look. You can gain access to this useful genomics resource by visiting www.genome.gov and looking under Educational Resources. The NCHPEG membership meets annually, and the January 2003 slides are available on the Web page. See what you might have missed, including a great presentation by Cindy Prows RN, MSN: “Outcomes of a Web-Based Genetics Institute for Nursing Faculty.”

NHGRI Rapid Data Release Policy
At its February meeting, the National Advisory Council for Human Genome Research (NACHGR), the main advisory group to NHGRI on genetics and genomic research, discussed the subject of pre-publication release of large-scale sequencing data. NACHGR approved a draft policy that would reaffirm and extend the rapid data-release policies developed to implement the 1996 Bermuda Principles and recommended that NHGRI publicize the draft policy statement for the purpose of obtaining comment from the scientific community.

Legislation
Federal legislation and international proclamations regarding genetics are currently in the news. Visit NHGRI’s Web site, under Policy and Ethics, for breaking news that has potential implications for patients.

Researchers Identify Gene for Premature Aging Disorder
A team from NHGRI reported the discovery of the genetic basis of a disorder that causes a dramatic form of premature aging. (See www.genome.gov under Newsroom for more details.)

Under NHGRI Meeting-Recorded Web Casts
See the Human Genome Project press conference: “From Double Helix to Human Sequence—and Beyond. Bringing the Genome to You.”

A Vision for the Future of Genomics Research
For those with access to Nature, they have published (422[24], pp. 835-847) the vision for the future of genomics research that came out of NHGRI’s almost two-year planning process.

 
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Special Interest Group Newsletter  June 2003
 
   
Cancer Genetics SIG Member News



Web Sites of Interest to CAG SIG Members
  • ISONG Credentialing Commission link on the ISONG Web site (www.isong.org)

  • Genetic Nurse Credentialing Commission (www.geneticnurse.org)
  • Coalition of State Genetics Coordinators (www.stategeneticscoordinators.org)
  • Genetics and Public Policy Center (www.dnapolicy.org)


  • Welcome, New Members!
    Mary Claire Alexander, San Francisco, CA
    Kari Wilson, Mexico, MO
    Joanne Harris, Liburn, GA
    Cynthia Perry, El Cajon, CA
    Lori Hollingsworth, Madison, WI
    Joel Hansen, Dallas, TX
    Debbie Canadas, Moss Beach, CA
    Michelle Cox, Dayton, OH
    Judith Parham, Kirkwood, MO
    Toni McCambridge, Sussex, NJ


     
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    Special Interest Group Newsletter  June 2003
     
       


    Cancer Genetics SIG Officers

    Coordinator
    Agnes Masny, RN, MPH, MSN, CRNP
    Fox Chase Cancer Center
    7701 Burholme Ave.
    Philadelphia, PA 19111-2412
    215-728-2892
    215-728-4061
    ac_masny@fccc.edu



    Coordinator-Elect and Editor
    Judie Much, RN, APN-C, AOCN®
    9027 Easton Rd.
    Ottsville, PA 18942-9653
    732-235-6925 (B)
    732-235-7715 (fax)
    muchjk@umdnj.edu

     

    Co-Editor
    Marilyn Kile, RN, MSN, AOCN®, APR
    Good Samaritan Hospital
    10 E 31st St.
    Kearney, NE 68847-2926
    308-440-5408 (B)
    308-865-2907 (fax)
    marilynkile@catholichealth.net


    ONS Publishing Division Staff
    Lori Wilson, BA
    Staff Editor
    412-859-6288
    lwilson@ons.org

     

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    ONS Membership/Leadership Team Contact Information
    Angie Stengel, Director of Membership/Leadership
    astengel@ons.org
    412-859-6244

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    dwhite@ons.org
    412-859-6256

    Carol DeMarco, Membership/Leadership Administrative Assistant
    carol@ons.org
    412-859-6230

    The Oncology Nursing Society (ONS) does not assume responsibility for the opinions expressed and information provided by authors or by Special Interest Groups (SIGs). Acceptance of advertising or corporate support does not indicate or imply endorsement of the company or its products by ONS or the SIG. Web sites listed in the SIG newsletters are provided for information only. Hosts are responsible for their own content and availability.

    Oncology Nursing Society
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    866-257-4ONS
    412-859-6100
    ONS Online: www.ons.org

     
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