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Volume 10, Issue 2, November 2006
Message From the Coordinator
Nurses Use Genetics Education to Help Patients With Cancer

Jennifer Loud, RN, MSN, CRNP
Derwood, MD

Dear ONS Cancer Genetics SIG Colleagues,

It has been a busy, successful year for the Cancer Genetics SIG. Our ex-officio, Judie Much, CRNP, AOCN®, APRN, BC, developed an instructional session for the 31st Annual Congress titled "Prophylactic Surgeries: Strategies for Preparing Patients at High Risk of Cancer." For women at high genetic risk for breast and ovarian cancer, making the decision to pursue risk-reducing bilateral salpingo-oophorectomy (RRSO) can be extremely difficult. Fear of surgical menopause including hot flashes, changes in libido, dyspareunia, and osteoporosis leads many women to seek information about how to manage these issues prior to surgery. This instructional session provided information about the major side effects experienced by women who undergo RRSO and the most current management options.
Members of the Cancer Genetics SIG proposed an educational session for this year's Institutes of Learning called "Annual Clinical Cancer Genetics Update." The all-day institute will include several content areas:

  • Updates on the genetics and management of major hereditary cancer syndromes
  • Updates on new cancer genetic technologies being introduced into practice
  • Updates on the science of genetics and genomics and its impact on nursing practice
  • Updates on the ethical, legal, psychological, and social impact of cancer genetic care.
The goal of this institute is to provide all oncology nurses and advanced practice oncology nurses in particular with recent research findings in clinical cancer genetics. The program will be structured to disseminate information rapidly as well as to provide the opportunity to discuss potential immediate implications for nursing practice. Members of the Cancer Genetics SIG have been involved in clinical cancer genetics in diverse roles over the past decade, as the tremendous growth in the use of genetic information in cancer care has evolved. Our members have been involved in the
  • Education of nurses and other healthcare professionals
  • Research in nursing and genetics
  • Health policy related to genetic health care
  • Healthcare services for genetic health care.
Lastly, I would like to thank Judie Much, our Cancer Genetics SIG ex-officio for her leadership and dedication over the past years. As many of you know, it has been a very busy year professionally for Judy, and still she has managed to keep juggling all the plates that were thrown in her direction. I look forward to working with Judie over the next year and with the Cancer Genetics SIG members.


Jennifer T. Loud, RN, MSN, CRNP
Nurse Specialist, Research
Clinical Genetics Branch
National Cancer Institute, National Institutes of Health, Department of Health and Human Services
ONS Cancer Genetics SIG Coordinator

The Cancer Genetics SIG Newsletter is produced by members of the
Cancer Genetics SIG and ONS staff and is not a peer-reviewed publication.

Special Interest Group Newsletter  November 2006

Message from the Newsletter Editor
Co-Editors Contribute to Newsletter’s Success

Marilyn Kile, RN, MSN, APRN, AOCN®
Kearney, NE

I would like to thank co-editors Patricia Kelly and Patricia Herman for collaborating to put this newsletter together. They have been terrific to work with and have taken the initiative over the past three years to write and collect articles for the Cancer Genetics SIG Newsletter. It has been a pleasure to work with them.

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Special Interest Group Newsletter  November 2006

“My Family Health Portrait”: A Family History Tool
Is There Application for Nursing?

Patricia Kelly, RN, MS, AOCN®
Dallas, TX

A properly constructed and verified family medical history is important to determine whether an individual is at risk for a hereditary or familial cancer syndrome, as well as for other hereditary syndromes. Family history information provides important information about shared environmental, behavioral, social, and cultural aspects that may contribute to illness. An accurate family history can help to clarify a client’s risk for disease and determine the most effective prevention and treatment plan. However, gathering family history information can be time-consuming, and the process is rarely completed in one interview. Nurses frequently hear comments such as, “My family doesn’t live in this area, so I’m not sure what has happened with my sisters and brothers”; “I don’t really know what my grandmother died of, but I may be able to find out at the next family reunion”; or “I can’t remember this information off the top of my head.”

In order to address family medical history issues, U.S. Surgeon General Richard H. Carmona, MD, MPH, along with other Health and Human Services (HHS) agencies, has developed a public health campaign emphasizing the benefits of accurate and complete family history medical information. The U.S. government’s HHS Web site (www.hhs.gov/familyhistory) explains the initiative and provides valuable lay and professional resources.

A unique aspect of the initiative is “My Family Health Portrait,” a free, Web-based computerized tool that organizes basic family history information into a format that can be stored and/or printed. A patient or family member with about 10 minutes of effort and minimal to moderate computer skills can produce a visual picture of his or her family history. This figure shows a de-identified, initials-only family history example.

“My Family Health Portrait” can be stored on a personal computer, updated as indicated, and shared among family members, and a printed copy can be given to healthcare professionals.

Other key points about the tool include

  • It is keyed for six common diseases: heart disease, colon cancer, stroke, breast cancer, diabetes, and ovarian cancer. The individual can easily add other diseases.
  • It is available in Spanish.
  • All personal information can be stored exclusively on the user’s computer.
  • Print versions are available by calling 888-275-4772 (English version, #HRS00360; Spanish version, #HRS00361).
Does “My Family Health Portrait” have application for oncology nursing? Is this format acceptable to patients and family members? Can use of this tool increase the accuracy of family health information and/or decrease time spent in collecting and verifying family history? These and other questions are important determinants of the value of this tool. Try using “My Family Health Portrait” and explore the possibilities of implementing and evaluating this family history resource tool in your clinical practice.

U.S. Department of Health and Human Services. (2005). U.S. surgeon general’s family history initiative. Retrieved April 8, 2006, from http://www.hhs.gov/familyhistory/.
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Special Interest Group Newsletter  November 2006

Cancer Genetics SIG Member Graduates From Summer Genetics Institute at National Institutes of Health

Patricia B. Herman, MSN, RN, AOCN®
Bethlehem, PA


Patricia Kelly, MS, RN, AOCN®, clinical education specialist for Texas Health Resources Academic Programs, has graduated from the 2006 Summer Genetics Institute (SGI) at the National Institute of Nursing Research, National Institutes of Health (NIH). The Summer Genetics Institute is a competitive two-month summer research training program held on the NIH campus in Bethesda, Maryland. The program is designed to provide a foundation in molecular genetics for clinical practice and the research laboratory. Ms. Kelly’s area of research is “Focusing on Survivorship Issues: Genetic Variants Associated With Osteoporosis in the Postmenopausal Breast Cancer Population." Look for an article in the upcoming January 2007 issue concerning “the lived SGI experience.”

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Special Interest Group Newsletter  November 2006

News From the National Human Genome Research Institute (NHGRI)

Jean Jenkins, PhD, RN, FAAN
Bethesda, MD


Advances in Genomics to Biology: NHGRI Announces New Sequencing Targets
Comprehensive Strategy Seeks to Identify Structural Variation in Human Genome
NHGRI announced its latest round of sequencing targets, with an emphasis on enhancing the understanding of how human genes function and how genomic differences among individuals influence the risk of health and disease. A complete list of organisms and their sequencing status can be viewed at www.genome.gov/10002154. High-resolution photos of many of the organisms being sequenced in NHGRI’s Large-Scale Sequencing Program are available at www.genome.gov/10005141.

Two National Institutes of Health Initiatives Launch Intensive Efforts to Determine Genetic and Environmental Roots of Common Diseases
President’s FY07 Budget Calls for $40 Million a Year Boost for Multi-Year Effort; Companies to Commit More Than $25 Million to Launch Genetics Project This Summer
A National Institutes of Health (NIH) initiative will boost funding at the NIH for a multi-institute effort to identify the genetic and environmental underpinnings of common illnesses. Another initiative launches a public-private partnership among the NIH, the Foundation for the National Institutes of Health, and major pharmaceutical and biotechnology companies, especially Pfizer Global Research and Development of New London, CT, and Affymetrix Inc. of Santa Clara, CA, to accelerate genome association studies to find the genetic roots of widespread illnesses. The genetic analysis component of the two initiatives is highly complementary. See www.genome.gov and click on the newsroom for more information.

National Institutes of Health Launches Comprehensive Effort to Explore Cancer Genomics
Cancer Genome Atlas Begins With Three-Year, $100 Million Pilot
The National Cancer Institute and the National Human Genome Research Institute, both part of the National Institutes of Health, launched a comprehensive effort to accelerate our understanding of the molecular basis of cancer through the application of genome analysis technologies, especially large-scale genome sequencing. The overall effort, called The Cancer Genome Atlas (TCGA), will begin with a pilot project to determine the feasibility of a full-scale effort to systematically explore the universe of genomic changes involved in all types of human cancer.

In the TCGA Pilot Project, a Human Cancer Biospecimen Core Resource will support the collection, processing, and distribution of cancerous and healthy, control tissue samples to Cancer Genome Characterization Centers and Genome Sequencing Centers. The genes and other genomic targets identified will be sequenced by the centers using high-throughput methods similar to those employed in the Human Genome Project. TCGA Pilot Project seeks to identify genetic mutations in the DNA code that are specifically associated with the type of cancer being sequenced. In addition, the centers will work to identify other types of larger-scale genomic changes, such as copy number changes and/or chromosomal translocations, that contribute to cancer development and/or progression.

Advances in Genomics to Health
Gene Influences Antidepressant Response
Whether depressed patients will respond to an antidepressant depends, in part, on which version of a gene they inherit. Having two copies of one version of a gene that codes for a component of the brain’s mood-regulating system increased the odds of a favorable response to an antidepressant by up to 18% compared to having two copies of the other, more common version. Because the less-common version was more than six times more prevalent in white than in African American patients—and fewer African Americans responded—the researchers suggested that the gene may help to explain racial differences in the outcome of antidepressant treatment. The findings also add to evidence that the component, a receptor for the chemical messenger serotonin, plays a pivotal role in the mechanism of antidepressant action. The study, authored by National Institute of Mental Health researchers McMahon et al., was published in the May 2006 issue of the American Journal of Human Genetics.

McMahon, F.J., Buervenich, S., Charney, D., Lipsky, R., Rush, A.J., Wilson, A.F., et al. (2006). Variation in the gene encoding the serotonin 2A receptor is associated with outcome of antidepressant treatment. American Journal of Human Genetics, 78, 804–814.

Articles from the Genetics and Genomics in Nursing Series in the Journal of Nursing Scholarship;
Feetham, S., Thomson, E.J., & Hinshaw, A.S. (2005). Nursing leadership in genomics for health and society. Journal of Nursing Scholarship, 37, 102–110.

Frazier, L., Johnson, R.L., & Sparks, E. (2005). Genomics and cardiovascular disease. Journal of Nursing Scholarship, 37, 315–321.

Hegyvary, S.T. (2005). Genomics, tsunamis, and other frontiers of knowledge [Editorial]. Journal of Nursing Scholarship, 37, 95–96.

Horne, M.K., III, & McCloskey, D.J. (2006). Factor V Leiden as a common genetic risk factor for venous thromboembolism. Journal of Nursing Scholarship, 38, 19-25.

Jenkins, J., Grady, P.A., & Collins, F.S. (2005). Nurses and the genomic revolution. Journal of Nursing Scholarship, 37, 98–101.

Johnson, R.L., Williams, S.M., & Spruill, I.J. (2006). Genomics, nutrition, obesity, and diabetes. Journal of Nursing Scholarship, 38, 11-18.

Keltner, N.L. (2005). Genomic influences on schizophrenia-related neurotransmitter systems. Journal of Nursing Scholarship, 37, 322–328.

Kenner, C., Gallo, A.M., & Bryant, K.D. (2005). Promoting children’s health through understanding of genetics and genomics. Journal of Nursing Scholarship, 37, 308–314.

Loescher, L.J., & Merkle, C.J. (2005). The interface of genomic technologies and nursing. Journal of Nursing Scholarship, 37, 111–119.

Prows, C.A., Glass, M., Nicol, M.J., Skirton, H., & Williams, J. (2005). Genomics in nursing education. Journal of Nursing Scholarship, 37, 196–202.

National Coalition for Health Professional Education in Genetics (NCHPEG)/Genetics Resources on the Web (GROW)
The NCHPEG annual meeting was held in Bethesda, MD, on February 2–3, 2006. The primary focus of the meeting was risk assessment and communication. Meeting slides will be available at www.nchpeg.org.

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Special Interest Group Newsletter  November 2006

Experts Discuss Cancer Genetics and Clinical Application

Carol Cherry, MSN, RN, C, OCN®
Philadelphia, PA


This year marked the fourth annual Cancer Genetics Symposium, held March 14, 2006, at Fox Chase Cancer Center in Philadelphia. This one-day symposium sponsored by the Human Genetics and Family Risk Assessment Programs brings national experts together to update genetics professionals in topics relevant to practice. The 200-plus participants included nurses, doctors, genetic counselors, and basic science researchers. The event was strategically placed as day 3 of Fox Chase Cancer Center’s five-day course for nurses in cancer genetic risk counseling.

Planning for the symposium is a year-round effort led by Agnes Masny, CRNP, MPH, MSN. The planners peruse listserves such as the International Society of Nurses in Genetics and the National Society of Genetic Counselors for genetics professionals and receive communiqués from ONS, keeping track of questions and clinical cases that are posted. Working with the coordinators for continuing medical and nursing education at the center, the committee identifies leading experts in cancer genetics and asks them to address these clinical questions. As an example, there were questions posted on the process of reclassifying gene changes from variants of uncertain significance/polymorphisms to deleterious mutations. We asked Lawrence C. Brody, PhD, senior investigator, Genome Technology Branch, and Head, Molecular Pathogenesis Section of the National Human Genome Research Institute (NHGRI), to address this issue at the 2006 conference. He described collaboration between Myriad Genetic Laboratories and a consortium of genetic researchers coordinated by NHGRI that now allows this reclassification process to move more quickly.

Another issue of clinical impact is the current standard of offering breast magnetic resonance imaging (MRI) screening to BRCA1 and BRCA2 mutation carriers. We asked Mark E. Robson, MD, clinic director, Clinical Genetics Service, from Memorial Sloan-Kettering Cancer Center (MSKCC) to address this in his presentation. He remarked that there have been four large studies and numerous small ones showing that breast MRI has high detection rates and high sensitivity and therefore is being recommended for mutation carriers. He noted that the best way to offer MRI, either “stacked” (along with a mammogram) or “split” (at a different time point than a mammogram), is still unknown. At MSKCC, they offer it in split fashion. Research studies are currently under way to answer what interval is best for mammograms and breast MRI.

Presentations from the 2005 and 2006 symposiums are available as free webcasts on the Fox Chase Cancer Center Web site, www.fccc.edu/medical/cancergenetics2005.html. Free continuing education credits are available if you register and complete a post-test.

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Special Interest Group Newsletter  November 2006

Terms in MYH Case Presentation Clarified

Patricia B. Herman, MSN, RN, AOCN®
Bethlehem, PA


The August 2005 newsletter contained a case presentation of a person diagnosed with mutations in the MYH gene (see “Case Presentation” at http://onsopcontent.ons.org/Publications/SIGNewsletters/cg/cg9.2.html for the original article). Some readers had submitted comments about the article, and I appreciate Deborah MacDonald, RN, PhD(c), APNG, for taking the time and effort to provide clarification about these issues. Her comments are as follows.

The article stated that MYH is an autosomal recessive colorectal cancer syndrome; however, MYH is the associated gene, not the name for the syndrome. Biallelic mutations in this gene lead to the syndrome termed “MAP,” an acronym for MYH-associated polyposis. The phenotype of MAP is similar to that of familial adenomatous polyposis (FAP) and attenuated-FAP (multiple adenoma or polyposis coli). Thus, if APC mutation testing is negative when FAP or attenuated-FAP is suspected, MYH testing should be considered.

The second clarification deals with the use of the term “full mutation.” When discussing the risk of mutation for Marie’s siblings (assuming Marie inherited one of the mutations from each of her parents and that her siblings have the same parents), it would be more appropriate to state that each sibling has a 25% chance of inheriting a mutation from each parent (biallelic) and thus having the condition, a 25% chance of not inheriting either mutation, and a 50% risk of inheriting one mutation and thus being a carrier (monoallelic). Each of Marie’s children would be carriers of one of the two mutations and would be biallelic carriers only in the rare circumstance of inheriting an MYH mutation from their father. There is a 50-fold increased risk (80% cumulative lifetime risk to age 70; mean age of onset = 45 years) of developing colon cancer in biallelic carriers of the MYH mutation, and there is a threefold increased risk (8% cumulative lifetime risk to age 70) of developing colon cancer in a monoallelic carrier of the MYH mutation. Also, female breast cancer was reported in 18% of women who are monoallelic carriers of the MYH mutation (Nielsen et al., 2005).

Jenkins, M.A., Croitoru, M.E., Monga, N., Cleary, S.P., Cotterchio, M., Hopper, J.L., et al. (2006). Risk of colorectal cancer in monoallelic and biallelic carriers of MYH mutations: A population-based case-family study. Cancer Epidemiology, Biomarkers and Prevention, 15, 312–314.

Nielsen, M., Franken, P.F., Reinards, T.H., Weiss, M.M., Wagner, A., van der Klift, H., et al. (2005). Multiplicity in polyp count and extracolonic manifestations in 40 Dutch patients with MYH associated polyposis coli (MAP). Journal of Medical Genetics, 43(9), e54.

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Special Interest Group Newsletter  November 2006

ONS Genetics Online Education Series

ONS and the University of Pittsburgh School of Nursing have developed an online educational program titled, “ONS Genetics.” Participants of the course can earn 13.2 contact hours upon successful completion. This program may also be taken for college credit. To register for the program, visit the CE Central area of the ONS Web site at www.ons.org/cecentral or contact ONS Customer Service toll-free at 866-257-4ONS or e-mail customer.service@ons.org.

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Special Interest Group Newsletter  November 2006

Cancer Genetics SIG Welcomes New Members


Glenda Bell

Laurie Cariveau

Kenneth Cates

Laurie Clevenger

Kathleen Craig

Sylvia Doyle

Quannetta Edwards

Beth Emsley

Donna Hafner

Maggie Hield

Yuko Kawasaki

Melissa Mazor

Argelis McIntire

Laura Menken

Diana Morneault

Kimberly Offhaus

Wendy Rapp

Kristin Short

Trina Theis

Linda Underwood

Beverly Vanover

Oklahoma City, OK

Woodbury, MN

Little Rock, AR

Hettick, IL

Salina, KS

Charlotte, NC

La Verne, CA

Orlando, FL

Fairfax, VA

Charlotte, NC

Akashi, Hyogo, Japan

Oakland, CA

Orange Park, FL

Nashua, NH

Grand Junction, CO

Clermont, FL

Cedar Park, TX

Reynoldsburg, OH

Grand Island, NE

Colona, IL

Campbell Hill, IL


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Special Interest Group Newsletter  November 2006

Articles of Interest

Cancer Genetics SIG Members May Enjoy These Recently Published Articles

Check out the Oncology Nursing Forum (ONF) and the Clinical Journal of Oncology Nursing (CJON) for interesting articles about cancer genetics.

For access to the full-text versions of these and other ONF and CJON articles, visit the Publications area of the ONS Web site.

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Special Interest Group Newsletter  November 2006

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 at http://sig.vc.ons.org/, including
    • 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 "Chapters, SIGs & Virtual Communities."
  • Scroll down to "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 the 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.

Subscribe 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.
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.

Sign 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  November 2006

Cancer Genetics SIG Officers

Jennifer Loud, RN, MSN, CRNP
Derwood, MD

Judith (Judie) Kehs Much, CRNP, AOCN®, APRN.BC
Allentown, PA

Jennifer Loud, RN, MSN, CRNP
Derwood, MD

Deborah MacDonald, RN, MS, APNG
Duarte, CA


Newsletter Editor
Marilyn Kile, RN, MSN, APRN, AOCN®
Kearney, NE

Newsletter Co-Editors
Patricia Kelly, RN, MS, AOCN®
Dallas, TX

Patricia B. Herman, MSN, RN, AOCN®
Bethlehem, PA

ONS Publishing Division Staff
Amy Nicoletti, BA
412-859-6328 (O)


Know someone who would like to receive a print copy of this newsletter?
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.

To view past newsletters, click here.

ONS Membership/Leadership Team Contact Information

Angie Stengel, MS, CAE, Director of Membership/Leadership

Diane Scheuring, MBA, Manager of Member Services

Carol DeMarco, Membership/Leadership Administrative Assistant

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

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