Volume 16, Issue 3, December 2012
Coordinator’s Message
Recapping Recent SIG Activities

Jacqueline Hale, RN, APN-C, AOCN®, APNG
Flemington, NJ

Dear Cancer Genetics (CAG) SIG members,

I am pleased to report on the two following SIG activities.

  • 2013 CAG SIG Congress sessions
  • Revised and updated CAG SIG position statement, “Oncology Nursing: The Application of Cancer Genetics and Genomics Throughout the Oncology Care Continuum”

The CAG SIG has been busy. Early this past summer, I called for submissions for session topics and received many responses from SIG members. I am pleased that SIG members have a desire to learn and share the many applications of genetic and genomic information in patient care, planning, and survivorship. I collaborated with other SIGs for session presentations and matched ideas, presenters, and partnering SIGs. We have six topics and sessions that were accepted for presentation at the 2013 ONS Congress in Washington, DC, and are partnering with the Nurse Navigator (NAV); Management and Program Development (MGT); and Targeted and Biological Therapies (BIO) SIGs. This is impressive!

Program topics, speakers, and SIG associations include

  • “The Epigenetic Pet Shop: KATs and BRDs, But Who Let the DOGs Out?"—Julie Eggert, RN, PhD, GNP-C, AOCN® (CAG SIG), and Lori Williams, PhD, RN, MSN, BSN, BA (Blood and Marrow Stem Cell Transplant SIG)
  • “Successful Hereditary Risk Assessment Program Development”— Suzanne M. Mahon, RN, DNSc, AOCN®, APNG (CAG SIG), and Dawn Sumner, RN, MSN, OCN® (MGT SIG)
  • “I Can’t Believe It’s Not BRCA: Limitations of BRCA Testing”—Jacqueline Hale, RN, APN-C, AOCN®, APNG (CAG SIG)
  • “Lynch Syndrome: Universal Screening to Advocacy”—Ilene Lattimer, RN, OCN®, CCRC (CAG SIG), and Jill Chang
  • “Integrating Genetics in the Gynecologic Oncology Nurse Navigator Role”—Carol Cherry, MSN, RN, AOCNS®, APNG (CAG SIG), and Penny Daugherty, RN, MSN, OCN® (NAV SIG)
  • “Biomarkers: A Primer on the Genetics, Genomics, and Treatment Implications”—Kristine Deano Abueg, RN, MSN, OCN®, CBCN (BIO SIG), and Jennifer T. Loud, RN, CRNP, DNP (CAG SIG).

Early in 2013, the ONS Board asked the CAG SIG to update and combine its position statements. SIG member volunteers representing various roles and settings worked diligently to rewrite and consolidate three position statements into one position statement, “Oncology Nursing: The Application of Cancer Genetics and Genomics Throughout the Oncology Care Continuum.”This new position statement will be on the ONS Web site soon, and I encourage everyone to read it. The position statement reflects the challenges faced by nurses working in a variety of employment settings and addresses the scope and standards of nursing practice according to state regulations and educational preparation. I want to thank the task force for their work on this statement.

We are challenged with the rapid integration of genetic and genomic information in teaching; taking family histories; monitoring responses to medications; making treatment decisions and screening recommendations; and much more. Through policy and practice changes, we are paving the way for our non-oncology nursing colleagues and other healthcare professionals to integrate genetic and genomic information into their practice. Genetic and genomic standards are part of important accreditation processes.

Remember, you can have a voice in CAG SIG activities. Please share your questions and experiences. You can post on the discussion board; write an article for the newsletter; or volunteer during ONS Congress or other events. Check out our Virtual Community—it’s a great way to get to know your colleagues.

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  December 2012

Study Aims to Increase Nurses' Genetics Competency

Beth Hayden, BSN, MBA, RN, OCN®
Chicago, IL

Peggy Rogers, BSN, RN, OCN®
Chicago, IL

As previously reported in the August 2012 issue of the Cancer Genetics SIG Newsletter, the National Council of State Boards of Nursing (NCSBN) Center for Regulatory Excellence grant program awarded a West Virginia University School of Nursing faculty member a two-year $300,000 grant to develop, implement, and evaluate a program to improve genetics knowledge among nurses. “Expanding RN Scope of Practice: A Method for Introducing a New Competency (MINC) Into Nursing Practice” is a study aimed to establish and assess the outcome of a Magnet Champion’s yearlong intervention to improve the capacity of the institution to integrate genomics into nursing healthcare delivery.

The first phase of the study involved conducting an initial staff survey at prospective institutions that included questions regarding current practice, knowledge, attitudes, and opinions about implications of genetic and genomic medicine for preventing and treating common diseases. At our institution, OSF Saint Anthony Medical Center, we surveyed 420 nurses, which represent 63.6% of our total RN population. We are proud of these results because we had the highest response rate of all participating institutions.

The second phase of the study began with a two-day kickoff meeting in Washington, DC, in September to analyze data reports. One of the goals of the kickoff meeting was to begin development of an individual hospital’s yearlong action plan aimed at improving nursing genetic and genomic competency in practice. The grant includes quarterly dyad (administrator and educator) updates, written reports, monthly conference calls, and virtual site visits with the dyads to discuss action plans and progress. 

At the two-day kickoff event, the dyad teams were given the overall MINC preliminary survey data results, as well as their institution’s results. The MINC project team reviewed Essentials of Genetic and Genomic Nursing: Competencies, Curricula Guidelines, and Outcome Indicators (2nd ed.); presented basic genetic and genomic concepts and implications for nursing practice, education, and policy; and bridged the gap between genome research and clinical care. 

The second day of the kickoff included a bus trip to the National Institute of Health in Bethesda, MD, where we utilized the computer laboratory to access a number of online genetic resources that will be helpful in teaching genetics and genomics. The dyads were introduced to the Genetic/Genomics Competency Center for Education and the Global Genetics and Genomics Community, which use interactive, Web-based technology to increase skill, knowledge, and competency.

The third phase of the study is the outcome assessment, which includes a repeat of the baseline surveys to assess dyad members’ personal levels of genomic competency, an institutional status survey completed by the dyad to assess institutional achievements, and a post-project survey of the nursing staff. The 2013 evaluation phase also will identify the institutional policies that support genomic health care and will include an overall program evaluation and satisfaction survey.

Thus far, being a part of this groundbreaking nursing research study has been truly amazing. We look forward to networking and strategizing with our fellow dyads as we implement action plans in the upcoming year to integrate genetics and genomics into nursing practice and increase genomic competencies.

OSF Saint Anthony Medical Center is one of 21 Magnet designated hospitals chosen to participate in the MINC project. Beth and Peggy are the administrator and educator dyad for this institution.

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Special Interest Group Newsletter  December 2012

SIG Members Present at National Conferences

Jennifer T. Loud, RN, CRNP, DNP, presented an abstract session, “Uptake of Risk-Reducing Surgery in BRCA1/2 Mutation Carriers Undergoing Cancer Screening: Understanding Decision-Making Using the Middle-Range Theory of Transition” at the Connections: Advancing Care Through Science Conference in Phoenix, AZ, in November.

Patricia Kelly, DNP, RN, CNS, AOCN®, presented “Colon Cancer Bottom Line: Family History and Tumor Screening Make a Difference” at the Scripps 32nd Annual Oncology Nurses Symposium in San Diego, CA, on October 9.

Please let us know if you have presented or been published. We want to share the good news in the next newsletter! Send the details to one of the Cancer Genetics SIG Newsletter co-editors, Rose Bell, ARNP-C, MSN, OCN®, or Patricia Kelly, DNP, RN, CNS, AOCN®.

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Special Interest Group Newsletter  December 2012

CAG SIG Celebrates 15 Years

The ONS Board recognized the Cancer Genetics (CAG) SIG for 15 years of providing genetic and genomic education and support to the organization. Happy birthday to the CAG SIG!

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Special Interest Group Newsletter  December 2012

Case Study
Ethical Dilemmas in Cancer Genetics

Catherine McQuade, RN, BSN, OCN®, CCRC, CBHN
Palm Coast, FL

Case History
In 2006, a 40-year-old woman, Sandy (not her real name), was diagnosed with breast cancer. Her medical oncologist referred her for hereditary cancer education, counseling, and genetic testing. Sandy told her oncologist that her mother sent her a paper saying she had a genetic test done after her second breast cancer diagnosis.

At her genetics appointment, Sandy shared her mother’s health history.

  • First breast cancer diagnosis at age 44
  • Contralateral breast cancer at age 56
  • BRCA full-sequence testing in 2005 (at age 57)
  • No surviving siblings, no health histories
  • Maternal grandmother had ovarian cancer at age 50 and died from the disease.
  • Maternal grandmother did not have siblings.
  • No other family health history information

Patient Presentation
Psychosocial history: She was estranged from her family of origin and divorced. She was multiparous but could not remember if she had given birth to four or five children and did not have custody of any of them. She had a history of drug addiction and had been through a drug and alcohol detoxification and rehabilitation program three times. At her genetics visit, she reported “being clean” for four months. She appeared under-nourished, avoided eye contact, and was distracted easily. On physical examination, she had a large breast mass that she stated “had been there for a while.” She believed it was cancer but was not sure what she wanted to do about this. At the time of her genetics visit, she had decided to follow through with medical treatment and consented to neoadjuvant chemotherapy. She also agreed to see a psychiatrist and was diagnosed as having an anxiety disorder. It was unclear if she was still using illegal substances. She was a candidate for BRCA testing based on age at diagnosis, as well as her family history.

The healthcare team encouraged Sandy to obtain a copy of her mother’s test results. She reported that she had not had contact with her mother in years but complied. Her mother mailed a copy of the BRCA testing report and offered to come and stay with her daughter. Sandy declined.

According to her mother’s BRCA testing report, she had a “suspected deleterious, BRCA2 variant of uncertain clinical significance.” The healthcare team met and recommended testing for the suspected deleterious variant. The recommendation was based on the family history of bilateral breast cancer, early-onset breast cancer, and a report of an ovarian malignancy. The family pedigree was suggestive of hereditary breast and ovarian cancer. Testing for the suspected deleterious variant would provide important information regarding Sandy’s medical management if the variant were reclassified. (Sandy had intact ovaries. Thus, risk-reduction surgery would be a consideration.)

Sandy was tested for the BRCA2 variant and was found to have the same suspected deleterious variant as her mother. She had a partial response to neoadjuvant chemotherapy and had a bilateral mastectomy. Sandy and her surgeon decided upon bilateral mastectomy because of her mother’s second primary breast cancer. Sandy remained drug-free throughout treatment but was lost to follow-up. She returned to our clinic in 2009 with widespread bone metastases and reported that she actively was using crack cocaine. She had lung and liver metastases and died seven months later.

The Dilemma
Two years after Sandy’s death, I received a report from the genetic testing laboratory that her variant was reclassified as “deleterious.” Prior to her death, Sandy had not listed a next of kin and refused to sign documents to have her mother listed as a healthcare surrogate. I was concerned for Sandy’s children, even though I had never met them. I knew that each of them had a 50% chance of inheriting the deleterious BRCA mutation. My records indicated that these children were minors. I had no access to their guardians.

Sandy had not given me permission to contact her mother, and I had to trust that her mother’s healthcare provider had received the deleterious reclassification results. I hoped that Sandy’s mother would share information about the deleterious mutation with extended family; however, I did not know if Sandy’s mother knew the whereabouts of Sandy’s biological children.

Actions Taken
I sent a letter to the medical oncologist who initially referred Sandy and included a copy of the reclassified test result. I listed my concerns for her children. I placed a copy of the letter in Sandy’s patient record.

Important Genetic Education Points

  • Encourage patients who are tested for inherited cancer syndromes to sign a release document permitting communication of results or changes to a proxy if the patient is deceased or incapacitated.
  • Inform the patient in writing that the test results impact not only their care but also that of their offspring, siblings, and others.

Additional Questions

  • How do we address our personal biases about genetic testing, addiction, and personality disorders?
  • Do other options exist for following up with Sandy’s children or other family members?
  • What are your thoughts?

Please share your thoughts on the Cancer Genetics SIG Virtual Community discussion board.

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Special Interest Group Newsletter  December 2012

Seventh Annual FORCE Conference

Robin S. Stevens, ARNP-BC, MSN, OCN®, CBC
Jupiter, FL

On October 18, Facing Our Risk of Cancer Empowered (FORCE) held its seventh annual conference on hereditary breast and ovarian cancer (HBOC) in Orlando, FL. This conference is unique, as it targets previvors, survivors, and family members of men and women who have a known BRCA1 or BRCA2 mutation, as well as healthcare providers and genetic counselors. The National Society of Genetic Counselors offers contact hours for RNs, nurse practitioners, and physician assistants.

Approximately 600 people attended the conference, and I met men and women from all over the world. At our luncheon, I sat next to a woman from Ecuador and met two women from Australia and Jerusalem. These were women who traveled here because they carry the BRCA gene mutation. People who attend this conference come for many reasons—they want to meet others with HBOC, share their stories, learn from others’ experiences, and raise questions with the HBOC experts. It is also a time for some to consider research studies that promote HBOC prevention and treatment options. Notable speakers included Judy Garber, MD; Steve Narod, MD; and Timothy Rebbeck, MD. Other topics and speakers included “Hereditary Cancer in High Risk Men,” Tuya Pal, MD; “ Genetics 101,” Susan Domchek, MD; “ Screening After Oophorectomy and Mastectomy,” Ilana Cass, MD, and Olga Ivanov, MD;  and “Emerging Topic: Can Removing the Fallopian Tubes Lower Risk?,” Doug Levine, MD. Other presentation topics included pancreatic cancer in BRCA carriers; metastatic hereditary breast cancers; legal rights; complementary medicine; yoga; pregnancy and fertility issues; and reconstructive options, along with numerous networking groups and “Breakfast With the Experts.”

During lunch on the second day, FORCE gave awards to individuals who have contributed to BRCA education and research. Steve Narod was recognized for his research contributions. To date, he has educated and tested approximately 10,000 people. Sharon Terry, American Civil Liberties Union attorney, was recognized for challenging Myriad Genetics over DNA patent rights and for her assistance with Genetic Information Nondiscrimination Act legislation. Two authors were recognized for their contributions to education and informing high-risk women of their options—Dina Roth Port for Previvors and Joi Morris for Positive Results. A special award was given to two sisters, Amy Byer Shaiman and Jan Byer, for establishing a scholarship in honor of their grandmother, Lillian Byer. This scholarship provided financial assistance for 100 women to attend the FORCE conference.

The FORCE conference is a great opportunity not only for our patients but also for any healthcare professional who is involved in genetic counseling and testing or any healthcare professional who would like to learn more in this emerging field. Sue Friedmen, FORCE founder and executive director, has been a driving force in increasing HBOC awareness. For example, when the U.S. Preventative Services Task Force recommended against prostate-specific antigen-based screening for prostate cancer, Sue Friedman and FORCE asked for an exception for men with BRCA mutations. FORCE has made and continues to make a tremendous impact on the world of genetics by empowering and educating people who have been affected by BRCA1 and BRCA2 gene mutations. For 2013, put this conference on your “to-do” list. You will benefit, and so will your patients.

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Special Interest Group Newsletter  December 2012

Exclusive Articles Available Before Print

The Oncology Nursing Forum (ONF) and the Clinical Journal of Oncology Nursing (CJON) are unveiling advanced print exclusive articles to give our readers access to important, cutting-edge content ahead of print.

Starting in October 2012, articles from the journals will be available on the main ONF and CJON pages. These articles will be open access, meaning they are available to members and non-members alike, until they appear in print at a later date. At that time, the content will become password-protected like all of the other articles that appear in print as online exclusives in the journals.

The first article to receive the advanced print exclusive designation is “Outcomes of an Uncertainty Management Intervention in Younger African American and Caucasian Breast Cancer Survivors,” by Barbara B. Germino, PhD, RN; Merle H. Mishel, PhD, RN, FAAN; Jamie Crandell, PhD; Laura Porter, PhD; Diane Blyler, PhD; Coretta Jenerette, PhD, RN; and Karen M. Gil, PhD. The authors propose a Younger Breast Cancer Survivor Uncertainty Management Intervention (YS-UMI) model as a way to improve uncertainty and lessen the amount of breast cancer-specific concerns that young (< 50 years) breast cancer survivors face. This exciting content also includes a podcast discussion with first author Barbara B. Germino. In addition, journal club questions are offered at the conclusion of the article so you can continue the discussion with your nurse colleagues.

Get more information about the advanced print exclusives from ONF and CJON.
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Special Interest Group Newsletter  December 2012

Journals Now Available in Digital Format

Did you know that the Clinical Journal of Oncology Nursing (CJON) and Oncology Nursing Forum (ONF) are now available in digital format? To access the digital editions, click on the journal you wish to view at www.ons.org/Publications and follow the instructions featured prominently in the top center of the page. The digital editions are a members-only benefit, so make sure you have your ONS username and password handy.

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Special Interest Group Newsletter  December 2012

What’s the Best Time of Year for ONS Congress?

Does the ONS Annual Congress occur at a busy time of year for you? Currently, Congress is held in either April or May each year. Which month(s) of the year would you most likely be able to fit Congress into your schedule? Tell us in our poll.

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Special Interest Group Newsletter  December 2012


RE:Connect is a blog written by oncology nurses on a variety of topics of interest to other nurses in the specialty, including facing day-to-day challenges at work, juggling busy lives at home, and keeping up to date with the magnitude of information available for practicing nurses. This month on RE:Connect, you’ll find the following new discussions.

As a reader, join in on the conversation and connect with other oncology nurse readers by posting your own stories, tips, ideas, and suggestions in the comments section at the end of each blog post.

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Special Interest Group Newsletter  December 2012

Five-Minute In-Service

In the latest issue of ONS Connect, the Five-Minute In-Service takes a look at why Veno-Occlusive Disease Is the Most Common Hepatic Complication in Stem Cell Transplants.

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Special Interest Group Newsletter  December 2012

Get a Sneak Peek at the Redesigned ONS Website

You asked, and we listened. In response to your feedback, ONS is in the process of redesigning our website from the ground up. Because we care about the best interests of oncology nurses, we've looked at your questions, comments, and usage data to design a site entirely focused on helping you get to the information you need as quickly and easily as possible. Here's a sneak peek at some of the features that will be available when the site launches in 2013. This site will be updated frequently as new features become available, so check back in soon.

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Special Interest Group Newsletter  December 2012

ONS Podcasts of Interest

ONF Podcasts
Do all patients experience sexuality problems associated with diagnosis and treatment? What is the best approach to discuss sexuality with patients? What are nursing interventions to assist patients with sexuality issues?
This month, Pam McGrath, BSocWk, MA, PhD, will discuss these questions and present implications for oncology nurses during a podcast interview about her November 2012 ONF article "The Impact on Sexuality After Diagnosis and Treatment for a Hematologic Malignancy: Findings From Australia." Previous research investigating the impact of diagnosis and treatment on sexuality has been limited. This qualitative research, which was part of a larger study exploring issues associated with the experience of survivorship, expands on previous research by exploring sexuality in patients undergoing treatment for hematologic malignancies. (Listen to ONF podcasts!)

CJONPlus Podcasts
The use of oral hormonal, chemotherapeutic, and targeted biologic agents has increased exponentially over the past decade. Practices to ensure safe storage, handling, administration, and disposal of these agents are needed to prevent unnecessary exposure of hazardous substances to the environment, professionals, patients, family members, and caretakers. In this CJONPlus podcast, author Joanne Lester, PhD, CRNP, AOCN®, discusses her December 2012 CJON article “Safe Handling and Administration Considerations of Oral Anticancer Agents in the Clinical and Home Setting.” The article focuses on the safe handling and administration of oral antineoplastic medications that can be given in clinical settings as well as in homes or alternative settings such as retirement homes and assisted-living facilities. (Listen to CJON podcasts!)

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Special Interest Group Newsletter  December 2012

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://ons.org/membership including
    • Educational opportunities for your subspecialty
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    • Calls to action
    • News impacting or affecting your specific SIG
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    • 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

  • Visit the "Find a SIG" page.
  • Locate and click on the name of your SIG from the list of all ONS SIGs displayed.
  • Once on your SIG’s main page, click “Join Group,” and log in using your ONS Profile. Don’t have an ONS Profile? Create one today, and then return to your SIG to join.

Subscribe to Your SIG’s Virtual Community Discussion Forum
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.
  • Locate and select "Subscribe to Discussion"
  • Enter e-mail address.
  • 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.
  • 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.
  • Select the "Click Here" feature, which will take you to a link to subscribe.
  • Once the "For Announcement Subscription Only" page appears select how you wish to receive your announcements.
    • As individual e-mails each time a new announcement is posted
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    • 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."
  • Click "Finish"
  • You are now subscribed to receive announcements.
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Special Interest Group Newsletter  December 2012

Cancer Genetics SIG Officers

Coordinator (2012-2014)
Jacqueline Hale, RN, APN-C, AOCN®, APNG
Flemington, NJ

Ex-Officio (2012-2013)/Co-Editor
Patricia Kelly, DNP, RN, CNS, AOCN®
Dallas, TX

Rose Bell, ARNP-C, MSN, OCN®
Gig Harbor, WA


Web Administrator
Lisa Aiello-Laws, RN, MSN, APNG, AOCNS®
North Cape May, NJ

Special Projects
Julie Eggert, RN, PhD, GNP-C, AOCN®
Greer, SC

ONS Copy Editor
Jessica Moore, BA, BS
Pittsburgh, PA

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 Specialist Carol DeMarco at cdemarco@ons.org or 866-257-4ONS, ext. 6230.

View past newsletters.

ONS Membership & Component Relations Department Contact Information

Brian K. Theil, CAE, Director of Membership and Component Relations Department

Diane Scheuring, MBA, CAE, CMP, Manager of Member Services

Carol DeMarco, Membership Specialist—SIGs

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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