Volume 8, Issue 2, June 2004   
     
Message from the Coordinator
Opportunities and Challenges


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

In April 2004, I turned over the responsibility of Coordinator for the Cancer Genetics SIG to Judie Much, CRNP, AOCN®, APRN, BC. Over the past two years, I have learned so much from Deborah MacDonald, RN, MS, CS, APNG(c), past SIG coordinator, the staff at ONS, and all the wonderful SIG members. I look forward to working with Judie in the capacity of ex-officio. I leave the SIG in good hands.

Our growth as a SIG presents both opportunity and challenge. As more nurses take on roles in cancer genetics, the SIG needs to address both the basic and advanced education needs of the members. One way we will be working to achieve this goal is networking with other genetic professional societies: the International Society for Nurses in Genetics (ISONG) and the National Society of Genetic Counselors (NSGC). Because most of the work done in professional organizations comes from its members, I encourage you to volunteer in any capacity for which you have time. Activities in the SIG, whether the newsletter or providing cases or updates, are ways to meet our primary goal as a SIG: To foster networking and education. I look forward to continued work with the SIG to meet these goals.

 
 

Special Interest Group Newsletter  June 2004
 
   


Message from the Editor
Expression of Appreciation


Marilyn Kile, RN, MSN, APRN, AOCN®
Kearney, NE
marilynkile@catholichealth.net


The Cancer Genetics SIG has been very fortunate to have exceptional leadership. As coordinator, Agnes Masny, RN, MPH, MSN, CRNP, contributed significantly to the success of the Cancer Genetics SIG. Agnes has been instrumental in advancing genetic education for nurses. Nurses can find the Genetics and Cancer Care: A Guide for Oncology Nurses on the ONS Web site at http://www.ons.org/clinical/documents/pdfs/Kit.pdf.

Project leader Dale Halsey Lea and team members Kathleen Calzone, Agnes Masny, and Annette Parry Bush collaborated to provide oncology nurses with this excellent resource. In 2003, a book was published entitled, Genetics in Oncology Practice: Cancer Risk Assessment. Amy Strauss Tranin, Agnes Masny, and Jean Jenkins co-edited the text. During her time as coordinator, Agnes worked to make the SIG more visible at Congress by ensuring that cancer genetics topics were on the program. As ex-officio, Agnes will remain a very visible figure within the Cancer Genetics SIG.

Judith Much, CRNP, AOCN®, APRN, BC, is the new coordinator for the SIG. She is an oncology nurse practitioner in Allentown, PA. Judie has served the SIG as newsletter editor and coordinator-elect in the past. Please show your appreciation to Judie by helping the Cancer Genetics SIG meet the opportunities and challenges that Agnes identified in her message.

 
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Special Interest Group Newsletter  June 2004
 
   


SIG Member Receives Award


Karen Greco RN, MN, ANP, was presented with the 2003 ISONG Founders Service award for her work in developing the "What is a Genetics Nurse?" brochure. This brochure can be downloaded free of charge from the ISONG Web site (www.isong.org) under clinical practice. Congratulations, Karen!
 
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Special Interest Group Newsletter  June 2004
 
   


News from the National Human Genome Research Institute

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


Advances in Genomics to Biology
Scientists Compare Rat Genome With Human; Mouse Analysis Yields New Insights into Medical Model, Evolutionary Process

"The sequencing of the rat genome constitutes another major milestone in our effort to expand our knowledge of the human genome," said NHGRI Director Francis S. Collins, MD, PhD. "As we build upon the foundation laid by the Human Genome Project, it has become clear that comparing the human genome with those of other organisms is the most powerful tool available to understand the complex genomic components involved in human health and disease."

For more information on this story, see www.genome.gov/11511308

Chicken Genome Assembled: First Avian Genome Now Available to Scientists Worldwide
The chicken is well positioned, from an evolutionary standpoint, to provide an intermediate perspective between mammals, such as humans, and lower vertebrates, such as fish. For more information on this story, see www.genome.gov/11510730

Chimp Genome Assembled by Sequencing Centers

NHGRI announces the first draft version of the genome sequence of the chimpanzee and its alignment with
the human genome. For more information on this story, see www.genome.gov/11509418
 
International Sequencing Consortium (ISC) Launches Online Resource: New Web Site Promotes Sharing of Large-Scale Sequencing Information
ISC has launched a free, online resource where scientists and the public can get the latest information on the status of sequencing projects for animal, plant, and other eukaryotic genomes. For more information on this story, see www.intlgenome.org

New User's Guide to the Human Genome at Nature Genetics
A special supplement to Nature Genetics provides an elementary, hands-on guide for browsing and analyzing data produced from the International Human Genome Sequencing Consortium. For more information on this story, see www.nature.com/cgi-taf/DynaPage.taf?file=/ ng/journal/v35/n1s/index.html

Advances in Genomics to Health
Genetic and Rare Diseases Information Center (GARD) Now Offers Assistance in Spanish

GARD, established by NHGRI and the Office of Rare Diseases (ORD), announced that it has expanded its efforts to enable people who speak Spanish to take advantage of its free services. People can reach Spanish-speaking information specialists, as well as other members of the GARD staff, by sending an e-mail to gardinfo@nih.gov or by calling the center's toll-free telephone line, 888-205-2311. For more information on this story, see www.genome.gov/11510308
 
Gene Variants May Increase Susceptibility to Type 2 Diabetes
International research teams studying two distinct populations have found variants in a gene that may predispose people to type 2 diabetes, the most common form of the disease. The researchers, who collaborated extensively in their work, reported their findings in companion articles in the April 2004 issue of Diabetes. For more information on this story, see www.genome.gov/11510995
 
New Directions for Sickle Cell Therapy in the Genome Era
The conference summary from November 19-21, 2003, can be found at www.genome.gov/10000700.[IT: please link] The goal of this conference was to consider how the new tools and techniques of genomics might be applied both to understand more fully the biology of sickle cell disease and to develop more effective therapeutic and preventive strategies for the disease. A trans-NIH group has been formed to assess conference recommendations and identify priorities for research.

New Resource is Coming!
NHGRI is developing a searchable Web-based database to provide easy access to federal, state, and international legislation and policies on privacy of genetic information, insurance and employment discrimination, informed consent, genetic testing and counseling, and commercialization and patenting so the database may eventually also track such other policy issues as newborn screening, direct-to-consumer marketing of genetic tests, non-medical applications (such as forensics), and DNA data banks. The database will be available at www.nhgri.nih.gov/PolicyEthics/

 
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Special Interest Group Newsletter  June 2004
 
   


Article Review
Article Offers Easy to Read Information

Patricia B. Herman, MSN, RN, AOCN®
Bethlehem, PA
hermanp@slhn.org


Hampel, H., Sweet, K., Westman, J., Eng, C. & Offit, K. (2004). Referral for cancer genetic consultation: A review and compilation of risk assessment criteria. Journal of Medical Genetics, 41(2), 81–91.

We are all living busy, somewhat chaotic lives, yet we long for simplicity. Simplification was the goal of an article published in the February 2004 edition of the Journal of Medical Genetics. Many studies, reports, and articles exist that give criteria for individual cancers or cancer syndromes. These authors critically reviewed publications and consensus guidelines to develop criteria for healthcare professionals to appropriately refer individuals for genetic testing and also recommend appropriate screening for disease. The article provides easy-to-read charts and addresses more common syndromes, such as breast/ovarian and HNPCC, as well as polyposis syndromes (FAP), prostate cancer, melanoma, Li-Fraumeni, MEN (multiple endocrine neoplasia), single cases of cancer that require genetic counseling, and family cancer clusters. An abstract is available at no charge online at http://jmg.bmjjournals.com/. If you are not a subscriber, you can select that option and review the abstract from the February table of contents.

 
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Special Interest Group Newsletter  June 2004
 
   


Secretary’s Advisory Committee Meeting on Genetics, Health and Society: MARCH 2004 Meeting Update


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


On March 1 and 2, 2004, the Secretary’s Advisory Committee on Genetics, Health and Society (SACGHS) convened its third meeting. As you are aware, SACGHS was established in September 2002 to (a) provide a forum for expert discussion and the formulation of advice on the range of complex issues raised by technologic developments in human genetics; (b) assist the Department of Health and Human Services in exploring issues raised by the application of genetic technologies; and (c) make recommendations to the Secretary of Health and Human Services concerning how such issues should be addressed. Because this mandate was fairly broad, the first two meetings helped to summarize critical issues posed by genetic technologies and the integration of genetics into healthcare practice.

Prior to the third meeting, a task force of SACGHS members surveyed the committee and ex-Officio members to decide on priority issues and rank the issues in priority order. The committee identified 12 top issues (they appear in alphabetical order, not in order of priority).

  • Access
  • Coverage and reimbursement
  • Direct to consumer marketing
  • Genetic discrimination
  • Genetic education and training
  • Genetic exceptionalism
  • Large population studies
  • Oversight of genetic technologies
  • Patents and access
  • Pharmacogenetics
  • Public awareness
  • Vision statement
At the third meeting, a straw vote was held to determine a priority ranking for the 12 issues. The ranking was a preliminary step in helping SACGHS identify two to three critical issues the committee would address over the next year. Sarah Carr and her staff developed Issue Briefs for each of the 12 issues. The brief summarized the issue, its relevance to the SACGHS charter, background, current status, and policy considerations. Notably, the briefs summarized the efforts of our predecessor committee, the Secretary’s Advisory Committee on Genetic Testing (SACGT). The committee used the briefs to frame further discussion and was committed to building on the prior work of SACGT.

To further prioritize the issues, a process was chosen during the meeting to establish four priority classifications.
  1. Not enough of a high priority
  2. Is a high priority but can be dealt with fairly quickly
  3. Transcends all issues
  4. High enough of a priority to warrant in-depth study by SACGHS
After the review of each issue and two rounds of straw votes, the issues were classified as follows:

Category 1 No issue was assigned to this category.
Category 2 Education and training
Genetic discrimination
Oversight of genetic technologies
Patents and access
Vision statement
Category 3 Access
Public awareness
Genetic exceptionalism
Category 4 Coverage and reimbursement
Large population studies
Pharmacogenomics
Direct to consumer marketing

Category 4 represents the issues that will involve more in-depth study. This does not mean that the other issues will not be addressed. The issues in Category 2 were thought to be very important, and implementation of further action could be achieved rather quickly. For example, genetic discrimination was ranked high on all votes. The committee decided to send a letter to Secretary Tommy Thompson reaffirming the administration’s support for S. 1053, the Genetic Information Nondiscrimination Act of 2003, and encourage advancement of this bill in the House. Oversight of genetic testing is another example. A great deal of work was accomplished by SACGT. The current committee will work to see that the recommendations of SACGT are addressed.

Although the tasks seem large, it is very encouraging to witness the commitment of all the parties involved. Of note, nursing has been highly visible at the meetings. Sharon Olsen represented ONS at the October 2003 meeting and Judy Lewis represented the International Society for Nurses in Genetics (ISONG) at the March 2004 meeting. Both addressed workforce issues, education, and training of healthcare professional preparation in genetics. The next SACGHS meeting is scheduled for June 14 and 15.
 
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Special Interest Group Newsletter  June 2004
 
   


Updated Medicare Policy on Cancer Genetic Testing

Patricia Kelly, RN, MS, AOCN®
Dallas, TX
PatriciaKelly@TexasHealth.org


As oncology nurses, we need to be informed professionals concerning recent benefit changes that may influence an individual’s ability to have hereditary cancer pre-disposition testing. As of February 2004, Medicare’s policies on cancer genetic testing have been updated and expanded significantly. Genetic healthcare professionals, Myriad Laboratory representatives, and others were responsible for the successful collaboration with Medicare representatives.

Medicare’s new coverage includes guidelines for affected individuals and clinically unaffected patients (i.e., when there is a family member with a known BRCA1, BRCA2, FAP, or MLH1 or MSH2 mutation). Prior to February 2004, very restricted BRCA1 and BRCA2 testing policies were in place, excluding any testing coverage for hereditary colon cancers. Current Medicare policies include expanded testing coverage for hereditary breast and ovarian cancers and now include testing policies for familial adenomatous polyposis (FAP) and hereditary non-polyposis colorectal cancer (HNPCC).

Medicare testing policies can be found at http://utmedicare.regence.com
(Click on Part B, then “Medical Policies,” then “Current Policies.”) If you have questions concerning Medicare policies, you may refer to this Web site or contact your local Myriad representative.

Genetics Short Course
For calendar dates for the Genetics Short Course, visit www.ons.org. Select the “Nursing Education” tab. Some of the future sites include
Nashville, TN, November 7-9, 2004
Pittsburgh, PA, March 4-6, 2005
Orlando, FL, April 30-May 2, 2005

ONS Establishes Liaison Relationship With the National Society of Genetic Counselors
At the request of the ONS Cancer Genetics SIG, the ONS Board of Directors approved forming an informal liaison relationship between ONS and NSGC. This relationship involves exchange of press releases, newsletters, issue papers, and other appropriate materials and information. This liaison will make more visible the importance of cancer genetics to the ONS leadership and the role of nurses in cancer genetics to the genetic counseling community.


 
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Special Interest Group Newsletter  June 2004
 
   


Member Publications


Greco, K., & Mahon, S. (in press), Common hereditary cancer syndromes: A clinical guide to patient assessment. Seminars in Oncology Nursing.

Balmer, L., & Greco, K. (in press). Prostate cancer recurrence fear: The PSA bounce. Clinical Journal of Oncology Nursing (CJON writing mentorship program paper).

Greco, K. (2003). Nursing in the genomic era: Nurturing our genetic nature. Medsurg Nursing, 12, 307-312.

Mahon, S., & Greco, K.E. (2003). Nurses who provide genetic counseling need ongoing education and certification [Letter to the editor]. Oncology Nursing Forum, 30, 361-362.

Greco, K.E. (2003). What is a genetic nurse? Medsurg Nursing, 12, 124.

Greco, K.E., & Mahon, S. (2003). Genetics nursing practice enters a new era with credentialing. Internet Journal of Advanced Nursing Practice, 5(2). Available on the Internet at http://www.ispub.com/ostia/index.php?xmlFilePath=journals/ijanp/vol5n2/genetics.xml

Greco, K. (2003). Mammography surveillance behavior and decision-making in older women with a family history of breast cancer [Abstract]. The Gerontologist, 3(1), 187.
 
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Special Interest Group Newsletter  June 2004
 
   


New Members


Catherine Sicotte, Framingham, MA
Annette Simulia, Alabaster, AL
Julie Griffie, Waukesha, WI
Tammy Gantt, West Columbia, SC
Rori Wood, Higginsville, MO
Jennifer Vickerman, San Carlos, CA
Judith Gentry, Metairie, LA
Janet Gray, Tyler, TX
Roxanna Gapstur, Saint Paul, MN
Jodi Cutler, Dallas, TX
Catherine Walla, Agoura Hills, CA
Carrie Kopec, Exton, PA
Jane Congleton, Avondale, AZ
Ilene Comeras, Granville, OH
Jennifer Luse, Clayton, CA
Tina Jacobs, Nashville, IN
Carolyn Reikenis, Jupiter, FL
Wendy Vogel, Kingsport, TN
Mahnaz Capps, Bethesda, MD
Michelle Fedewa, Lansing, MI

 
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Special Interest Group Newsletter  June 2004
 
   

Membership Information


SIG Membership Benefits

  • Network with colleagues in an identified subspecialty area around the country.
  • Contribute articles for your SIG’s newsletter.
  • Participate in discussions with other SIG members.
  • Contribute to the future path of the SIG.
  • Share your expertise.
  • Support and/or mentor a colleague.
  • Receive information about the latest advancements in treatments, clinical trials, etc. Participate in ONS leadership by running for SIG coordinator-elect or join SIG work groups. Acquire information with a click of a mouse: sig.ons.wego.net/?v2_group=0&p=4918
    • Educational opportunities for your subspecialty
    • Education material on practice
    • Calls to action
    • News impacting or affecting your specific SIG
    • Newsletters
    • Communiqués
    • Meeting minutes
Join a Virtual Community

A great way to stay connected to your SIG is to join its Virtual Community. It’s easy to do so. All you will need to do is
  • Log on to the ONS Web site (www.ons.org).
  • Select "Membership" from the tabs above.
  • Then, click on "ONS Chapters and Special Interest Groups".
  • Scroll down to "Visit the ONS Special Interest Groups (SIG) Virtual Community" and click.
  • Now, select "Find a SIG."
  • Locate and click on the name of your SIG from the list of all ONS SIGs displayed.
  • Once the front page of your SIG's Virtual Community appears on screen, select "New User" from the top left. (This allows you to create log-in credentials.)
  • Type in required information into the text fields as prompted.
  • Click "Join Group" (at the bottom right of the text fields) when done.


  • Special Notices
    • If you already have log-in credentials generated from the ONS Web site, use this information instead of attempting to generate new information.
    • If you created log-in credentials for the ONS Web site and wish to have different log-in information, you will not be able to use the same e-mail address to generate your new credentials. Instead, use an alternate e-mail address.
Subscribing to Your SIG’s Virtual Community Discussion Forum

All members are encouraged to participate in their SIG’s discussion forum. This area affords the opportunity for exchange of information between members and nonmembers on topics specific to all oncology subspecialties. Once you have your log in credentials, you are ready to subscribe to your SIG’s Virtual Community discussion forum. To do so
  • Select “Log In,” located next to “New User” and enter your information.
  • Next, click on the “Discussion” tab on the top right of the title bar.
  • Now, select “Featured Discussion” from the left drop-down menu.
  • Locate and select “Subscribe to Discussion” inside the “Featured Discussion” section.
  • Go to “Subscription Options” and select “Options.”
  • When you have selected and entered all required criteria, you will receive a confirmation message.
  • Click “Finish.”
  • You are now ready to begin participating in your SIG’s discussion forum.
To Participate in Your SIG’s Virtual Community Discussion Forum
  • First, log in. (This allows others to identify you and enables you to receive notification (via e-mail) each time a response or new topic is posted.
  • Click on "Discussion" from the top title bar.
  • Select "Featured Discussion" from the left drop-down menu.
  • Click on any posted topic to view contents and post responses.
Signing Up To Receive Your SIG’s Virtual Community Announcements

As an added feature, members also are able to register to receive their SIG’s announcements by e-mail!
  • From your SIG’s Virtual Community page, locate the “Sign Up Here to Receive Your SIG’s Announcements” section. This appears above the posted announcements section.
  • Select the “Click Here” feature, which will take you to a link to subscribe.
  • Once the “For Announcement Subscription Only” page appears on screen, select how you wish to receive your announcements:
    • As individual e-mails each time a new announcement is posted
    • One e-mail per day comprised of all new daily announcements posted
    • Opt-out, indicating that you will frequently browse your SIG’s Virtual Community page for new postings
  • Enter your e-mail address.
  • Click on "Next Page."
  • Because you have already joined your SIG’s Virtual Community, you will receive a security prompt with your registered user name already listed. Enter your password at this prompt and click "Finish."
  • This will bring up a listing of your SIG’s posted announcements. Click on "My SIG’s Page" to view all postings in their entirety or to conclude the registration process and begin browsing.
 
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Special Interest Group Newsletter  June 2004
 
   


Cancer Genetics SIG Officers

Coordinator
Judith (Judie) Kehs Much, CRNP, AOCN®, APRN, BC
Oncology Nurse Practitioner
Integrated Oncology Care
LVH/JDMCC
Cedar Crest & I-78, Suite 408
Allentown, PA 18105
Judith_K.Much@lvh.com

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


Historian

Deborah MacDonald RN, MS, CS, APNG(c)
City of Hope Comprehensive Cancer Center
1500 Duarte Rd
Duarte CA 91010-3012
626-256-6882 (O)
dmacdonald@coh.org

 

Newsletter Editor
Marilyn Kile, RN, MSN, AOCN®, APRN
Good Samaritan Health Systems Cancer Center
10 E. 31st Street
Kearney, NE 68848-1990
308-865-7199 (O)
308-865-2907 (fax)
marilynkile@catholichealth.net

Newsletter Co-Editors

Patricia Kelly, RN, MS, AOCN®
9649 Covemeadow Dr.
Dallas, TX 75238-1819
214-345-8324 (O)
214-345-6349 (fax)
PatriciaKelly@TexasHealth.org

Patricia B. Herman, MSN, RN, AOCN®
St. Luke’s Hospital and Health Network
801 Ostrum St.
Bethlehem, PA 18015
610-954-3579 (O)
610-954-3583 (fax)
hermanp@slhn.org

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

 

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To print a copy of this newsletter from your home or office computer, click here or on the printer icon located on the SIG Newsletter front page. Print copies of each online SIG newsletter also are available through the ONS National Office. To have a copy mailed to you or another SIG member, contact Membership/Leadership Administrative Assistant Carol DeMarco at cdemarco@ons.org or 866-257-4ONS, ext. 6230.

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

Diedrea White, Manager Member Relations and Diversity Initiatives
dwhite@ons.org
412-859-6256

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

To view past newsletters click here.

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
125 Enterprise Dr.
Pittsburgh, PA 15275-1214
866-257-4ONS
412-859-6100
www.ons.org

 
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