Volume 14, Issue 1, August 2010
Ex-Officio's Message

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

My time as the Cancer Genetics SIG coordinator has come to an end. I have been privileged to serve with such an outstanding leadership team. I invite anyone interested in learning more, in developing leadership skills, or in networking with your oncology genetics colleagues to take a more active role with the Cancer Genetics SIG. Our SIG is going places and making great strides!

I would like to summarize some of our accomplishments of 2009.

  1. We developed a position statement on direct-to-consumer marketing of genetic testing and presented it to the ONS Board of Directors. The statement was been accepted and published in the July 2010 Oncology Nursing Forum (p. 385).
  2. The SIG developed a page on Facebook titled Cancer Genetics SIG ONS. Please become a fan!
  3. The SIG and ONS collaborated with the National Accreditation Program for Breast Cancer Centers (NAPBC) to define the appropriate credentialing and education required for genetics professionals and who can provide these services. This will be added to their new accreditation standards.
    1. Standard 2.16 “Genetic evaluation and management.” Their December 2009 newsletter noted the following change to the standards: “The definition will be clarified to include physicians and advanced practice nurses (APNs) as genetic counselors, and links will be added to organizations that train APNs in genetic evaluation and maintenance—Effective 1/1/2010.”
  4. Genetics and Genomics: The Evolution of Oncology Nursing is coming soon from ONS.
  5. A Cancer Genetics Web course is currently under development.
  6. Nancy Gardner, PhD, RN, ANP, BC, our newsletter editor, was selected as the April 2010 ONS representative on the Consensus Panel to refine and validate the Essential Genetics and Genomics Competencies for Graduate Nursing, which included competencies for graduate nurses at the master's and doctorate level.
  7. There has been discussion with the International Society of Nurses in Genetics (ISONG) regarding the collaboration with our SIG and ONS in the development of oncology-specific genetic competencies. More to follow.
  8. The SIG sponsored five genetic and genomic educational sessions for the 35th annual Congress.
    1. Molecular Genetics: Implications for Lymphedema in Cancer Patients
    2. The Ins and Outs of Cancer Risk Assessment
    3. mTOR and More: Biology of Cancer Update
    4. Direct to Consumer Genetics/Genomics: Empowering or Endangering
    5. Getting Personal With Colorectal Cancer: Individualized Care.

Thank you to everyone in the SIG for all of your efforts and a job well done! But we have more to do. I would like to welcome Pat Kelly, DNP, APRN, CNS, AOCN®, as the incoming Cancer Genetics SIG coordinator. She has a wealth of knowledge to share and will be a great representative for our SIG.

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  August 2010

Thank You, Lisa!

Thank You, Lisa!Patricia Kelly, DNP, APRN, CNS, AOCN®
Dallas, TX

How do we say “thank you” to someone who has gone the extra mile? Check out the Cancer Genetics SIG accomplishments for 2009, and you will know that Lisa is a leader. At the 35th annual Congress in May, the Cancer Genetics SIG’s officers shared special “C” words that described Lisa.

  • Communicative: Our mail boxes were never empty as Lisa routinely shared important genetic updates.
  • Caring: Lisa kept us informed about important life events and crises within the SIG officer group. She even provided mailing addresses to send condolence cards.
  • Can do: Lisa has done a lot this year and always included the team for input.
  • Calm: Lisa never gets upset when someone does not follow through.
  • Capable: She does an awesome job.
  • Collaborative: Lisa collaborated with the National Accreditation Program Breast Center’s liaison to draft verbiage that includes advanced practice nurses in the genetics standards accreditation section.
  • Collegial: Lisa is always willing to share information.
  • Clever: In June 2010, Lisa began her PhD coursework in the School of Nursing at Villanova University, and she is the recipient of the Ann Olsen Memorial Doctoral scholarship award from ONS.

Congratulations Lisa! I hope Lisa’s success serves as encouragement for other ONS members to apply for scholarship monies.

As I begin my term as the Cancer Genetics SIG coordinator, I want to learn more about you. Please e-mail me, and share your genetic interests, work experiences, and ideas for the SIG. This is your SIG.

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Special Interest Group Newsletter  August 2010

From the National Cancer Institute Bulletin

The following is from Winstead, E.R. (2010). NCI Cancer Bulletin: Genome study of aggressive breast cancer yields clues to metastasis. Retrieved from http://www.cancer.gov/ncicancerbulletin/042010/page7.

To study how cancer cells change as the disease progresses, researchers have carried out a genome analysis of four DNA samples from a woman with breast cancer whose disease spread to her brain. In addition to the primary breast and metastatic brain tumors, the researchers used the patient’s normal blood cells and a tumor grown in a mouse from a sample of the original tumor (a xenograft).

A four-way comparison of the sequence and genome structure data has opened a window into the metastatic process in a single patient. The metastatic and xenograft tumors (i.e., the secondary tumors) both appeared to arise from a minority of cells in the patient’s breast tumor, researchers from the Washington University School of Medicine in St. Louis and their colleagues reported in the April 15 Nature.

The patient was a 44-year-old African American woman with inflammatory breast cancer that had the hallmarks of the basal-like subtype of breast cancer. These are aggressive tumors that disproportionately affect younger women and African Americans. Despite chemotherapy and radiation therapy, the patient died within a year of diagnosis, and her case was not unusual, the researchers noted.

To investigate the genetic changes underlying this metastatic process, a team from Washington University (Ding et al., 2010) profiled genetic mutations, structural changes, and differences in the number of gene copies in the four samples. Their analysis revealed 48 genetic mutations that were common to all three tumors (primary, metastatic, and xenograft), a number of structural alterations, including some large deletions, and about seven translocations that occurred between chromosomes in the primary tumor alone, confirming previous reports that basal-like breast cancers have unstable genomes.

While additional genetic mutations and other changes did occur over the clinical course of the disease, most of the original mutations and structural variants in the breast tumor were present in the metastatic brain tumors and in the xenograft.

Tour de Force
“This study is a true tour de force in genomics,” said Dr. Patricia Steeg, who heads the Women’s Cancers Section in NCI’s Laboratory of Molecular Pharmacology and who was not involved in the study. “Wouldn’t it be fascinating to see how a liver metastasis varies from a brain metastasis? Or how two metastases from the same organ do or don’t vary?”

This was only the second study to use whole-genome sequencing to compare a primary tumor and metastasis from the same patient. In the first study, published in 2009, the majority of mutations found in the metastasis had not been present in the primary tumor. But there were fundamental differences between the studies, including the fact that the metastatic process evolved over nine years in the first study compared with less than a year in the current report.

“This emerging literature says that metastases are not identical to primary tumors,” noted Dr. Steeg, who is also president of the Metastasis Research Society. “They may be similar in many respects, but important differences remain. For most cancers, we are trying to develop treatments for metastatic disease, and I hope the new data will prompt more translational researchers to use metastatic models for experimental therapeutics.”

Because basal-like breast cancers have unstable genomes, researchers have wondered whether the deadly metastatic process is driven by mutations that occur after the tumor cells arrive at the distant site, or whether the primary tumor produces cells with the full complement of mutations required for metastatic growth. The findings support the latter view, but the researchers stress that more comparisons are needed to confirm the results.

Some of those studies are underway, according to Dr. Elaine Mardis, co-director of The Genome Center at Washington University and the study’s senior author. Her team has obtained DNA samples from other patients with basal breast cancers that have spread to various parts of the body.

“Sequencing more samples could help us understand the genetic landscape of the basal-subtype tumor and also to identify commonly mutated genes,” said Dr. Mardis. “These genes would be of interest for developing targeted therapies for treating these very aggressive tumors.”

Basal breast cancers are heterogeneous, noted Dr. Steeg, and the patient in this study represents one rare form.


Ding, L., Ellis, M.J., Li, S., Larson, D.E., Chen, K., Wallis, J.W., . . . Mardis, E.R. (2010). Genome remodeling in a basal-like breast cancer metastasis and xenograft. Nature, 464, 999–1005. doi: 10.1038/nature0898

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Special Interest Group Newsletter  August 2010

From the National Human Genome Research Institute
National Human Genome Research Institute (NHGRI) Launches Online Genomics Center for Educators of Nurses, Physician Assistants

From the National Human Genome Research Institute

An online tool to help educators teach the next generation of nurses and physician assistants about genetics and genomics has been launched by the National Human Genome Research Institute (NHGRI), part of the National Institutes of Health. The tool is part of NHGRI's effort to address the growing need among healthcare professionals for knowledge in this area, which is paving the way for more individualized approaches to detect, treat, and prevent many diseases.

The Genetics/Genomics Competency Center (G2C2), developed by the University of Virginia in Charlottesville through a contract with NHGRI, is a free, Web-based collection of materials on genetics and genomics designed for educators who train nurses and physician assistants. To access this resource, visit www.g-2-c-2.org.

"As we enter the era of personalized medicine, establishing genetic and genomic literacy is an urgent concern for those who educate health professionals. This online resource will provide a valuable new tool for meeting that challenge," said Jean Jenkins, RN, PhD, NHGRI senior clinical advisor to the director. "In the future, we hope to expand this tool to include other health care professions, such as pharmacists and physicians."

Jenkins announced the new resource at the 2010 American Association of Colleges of Nursing (AACN) Master's Education Conference in New Orleans.

Nursing and physician assistant educators can use the Genetics/Genomics Competency Center to find and download materials for use in their classrooms. They also can share their favorite genomic and genetic teaching resources and materials with other educators by uploading material, which is regularly reviewed by the center's editorial board to ensure quality control.

The Genetics/Genomics Competency Center was created under the guidance of an advisory group made up of representatives from a wide range of research and professional organizations. In addition to AACN, participating organizations included the American Academy of Physician Assistants, National Cancer Institute, National Coalition for Health Professional Education in Genetics, National League for Nursing, National Society of Genetic Counselors, Physician Assistant Education Association, and Sigma Theta Tau International, the honor society of nursing.

"We're very excited that physician assistants were included in this pioneering effort. Our profession has been at the vanguard of realizing the importance of genetics and genomics in the future of medicine, and encouraging efforts to incorporate more of these key concepts into education and training," said physician assistant Michael Rackover, MS, an advisory group member who directs the physician assistant program at Philadelphia University.

To encourage sharing and reduce duplication across healthcare disciplines, the Genetics/Genomics Competency Center helps to match existing educational resources with educational competencies for health professionals. The online center accomplishes this through sophisticated, cross-mapping of learning activities and assessments, outcome indicators and professional competencies, such as Genomics Nursing: Competencies, Curricula Guidelines and Outcome Indicators, and similar guidelines for physician assistant education, Establishing Essential Physician Assistant Clinical Competencies Guidelines for Genetics and Genomics.

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Special Interest Group Newsletter  August 2010

Cancer Genetics SIG Represented at Congress

The Cancer Genetics SIG was well represented at the ONS 35th Annual Congress this year with several presentations by SIG members. I had the opportunity to work with Lisa Aiello-Laws, RN, MSN, APNG, AOCN®, and Deborah MacDonald, PhD, APNG, to present “The Ins and Outs of Cancer Risk Assessment.” This was the first time I had ever presented at Congress, and with Lisa’s and Deborah’s guidance and leadership, it proved to be a great experience for me. I encourage everyone to consider presenting and sharing their knowledge and information regarding the application of cancer genetics.

MacDonald opened with the statement that cancer risk assessment is the responsibility of many members of the healthcare team and can occur at several points along the care continuum. She continued with the construction of a three-generation pedigree, defining the importance of collecting pathology reports for clarification of tumor types and reliability of the collected data from the patient. She described the “red flags” that serve to trigger further investigation.

  • Young age onset
  • Multiple cancers in a single individual
  • Consecutive generations affected
  • Cancer in at least two close relatives in the same lineage
  • Evidence of autosomal dominant transmission
  • Constellation of physical characteristic of a specific syndrome
  • Multiple rare cancers in single lineage
  • Male breast cancer
  • Bilaterality (breasts, if first prior to age 50; kidney; retinoblastoma)

She noted that other triggers for a risk assessment referral include the following.

  • Breast or colon cancer before age 50
  • In-situ breast cancer before age 40
  • Ovarian cancer, any age
  • Male breast cancer, any age
  • Ashkenazi Jewish, breast or ovarian cancer, any age
  • Medullary thyroid cancer, any age
  • Multiple (10 or more) colon polyps in an individual, especially if the first occurred before age 50
  • Multiple rare cancers, same lineage, more than one generation affected.

Lisa Aiello-Laws took the podium next and reinforced the role genetics and genomics play in cancer development. She clearly defined genetics, genomics, and gene function in cancer control and cancer development.

  • Genetics: the study of individual genes and their impact on relatively rare single-gene disorders.
  • Genomics: the study of all the genes in the human genome together, including their interactions with each other, the environment, and other psychosocial and cultural factors.
  • Proto-oncogenes: genes that encourage the growth of a cell.
  • Tumor suppressor genes: genes that stop excessive growth of the cell.
  • Angiogenic genes: genes that control a cell's blood supply.
  • Metastasis genes: controlling the spread of cancer.
  • DNA repair genes: repair acquired DNA errors.
  • Mismatch repair genes: repair mistakes acquired during recombination. 

To conclude, I described the role of the genetics professional in the cancer risk assessment setting. The risk assessment nurse is all of the following.

  • Educator
  • Supporter and counselor
  • Navigator
  • Facilitator
  • Healthcare provider
  • Advocate

The genetics nurse has responsibilities to the healthcare team to

  • Be a part of a team for medical management.
  • Be a leader in the application of genomics to cancer care.
  • Maintain a unique skill set.
  • Be a program manager.
  • Be administratively and fiscally responsible.

The genetics nurse’s responsibility to the community, employer, and the profession includes the following.

  • Developing your model of care
  • Tracking outcomes
  • Tracking direct or downstream revenue
  • Maintaining database for further communication
  • Becoming recognized as the resource for genetic information
  • Promoting healthy behaviors and screening
  • Keeping abreast of latest findings
  • Providing health promotion
  • Providing cancer risk management
As oncology nurses, we are active not only in the provision of optimal treatment of cancer but also in early detection and prevention and in follow-up care. Our roles and skills are multifaceted, and genetic and genomic information is rapidly becoming integrated into the role of the nurse. Therefore genetics and genomics has become a necessary skill set for oncology nurses. It is very rewarding to be a part of the Cancer Genetics SIG and to be “spreading the knowledge” and mentoring colleagues.
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Special Interest Group Newsletter  August 2010

Take-Away Messages From the Genetic Information Non-Discrimination Act Panel Discussion

Take-Away Messages

Patricia Kelly, DNP, APRN, CNS, AOCN®
Dallas, TX

The ONS Cancer Genetics SIG sponsored an educational Genetic Information Nondiscrimination Act (GINA) information panel session at the 35th annual Congress SIG meeting in San Diego. Panelists included: Jennifer T. Loud, CRNP, DNP, Assistant Branch Chief, Clinical Genetics Branch, NCI, NIH, DHHS; Kathleen A. Calzone, MSN, RN, APNG, FAAN, Senior Nurse Specialist, Research Center for Cancer Research; Paula Rieger, RN, MSN, CAE, FAAN, chief executive officer of ONS; and Patricia Kelly, DNP, APRN, CNS, AOCN®, Genomics Consultant, Texas Health Resources.

The program’s objectives were to (a) describe the Genetic Information Nondiscrimination Act (GINA) and what GINA does and does not do; (b) discuss the implications for patients and family members, health professionals, and organizations (including ONS); and (c) list educational resources for patients and family members and health professionals.

GINA presentation take-away messages (not meant to be comprehensive) included:

  • Does not affect the practice of medicine. It does affect health insurers and employers.
  • Prohibits use of genetic information for employment decisions and for health insurance underwriting.
  • Protected genetic information includes family heath history, results of genetic tests, genetic counseling and other genetic services, and participation in genetic research. Neither family health history nor genetic test results can be considered as “pre-existing conditions”.
  •  GINA does not protect information about disease simply because it is genetic, when the disease is already diagnosed and manifested, or protect information about current health status.
  • GINA does not apply to members of the military, employers with fewer than 15 employees, individuals using the Indian Health Service, federal employees enrolled in the Federal Employees Health Benefits program, and veterans obtaining care through the Veterans Administration (these programs have internal policies in place which provide GINA-type protection.)
  • ONS played an important role in supporting GINA legislation. Visit the ONS Legislative Action Center at http://www.ons.org/LAC for more information about ONS and health policy issues.

The National Coalition of Health Professional Education in Genetics ([NCHPEG], http://www.nchpeg.org), Genetics and Public Policy (http://www.dnapolicy.org), and Genetic Alliance (http://www.geneticalliance.org/) have developed GINA educational materials for health professionals and for the public. The NCHPEG will release a PowerPoint® (Microsoft, Inc.) presentation titled “GINA for Health Professionals” which uses unfolding case studies to introduce key GINA concepts. Visit the NCHPEG Web site for more information.

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Special Interest Group Newsletter  August 2010

Genetic Information Non-Discrimination Act Resource List


A Guide to the Genetic Information Nondiscrimination Act. Retrieved from http://www.geneticfairness.org/ginaresource.html

Frequently Asked Questions About GINA. From the Genetics and Public Policy Center. Retrieved from http://www.dnapolicy.org/gina/faqs.html

Equal Employment Opportunity Commission (EEOC) GINA Fact Sheet. Retrieved from http://www.eeoc.gov/laws/types/genetic.cfm

National Human Genome Research Institute (NHGRI) Genetic Discrimination Fact Sheet. Retrieved from http://www.genome.gov/10002328

National Conference of State Legislatures (NCSL). Retrieved from http://www.ncsl.org/

National Association of Insurance Commissioners. Retrieved from http://www.naic.org/state_web_map.htm

The Genetic Information Nondiscrimination Act of 2008. Retrieved from http://www.gpo.gov/fdsys/pkg/PLAW-110publ233/pdf/PLAW-110publ233.pdf 

Title I: Document for Federal Regulations Regarding Insurance. Retrieved from http://edocket.access.gpo.gov/2009/pdf/E9-22504.pdf Note. The Departments of Health and Human Services, Labor, and the Treasury have published in the Federal Register proposed regulations for Title I of the Genetic Information Non-Discrimination Act.

Title II: Document for Federal Regulations Regarding Employment. Retrieved from http://edocket.access.gpo.gov/2009/pdf/E9-4221.pdf Note. The Equal Employment Opportunity Commission (EEOC) has published in the Federal Register its proposed regulations for Title II of the Genetic Information Non-Discrimination Act.

Resource List compiled by: Genetic Alliance, the Genetics and Public Policy Center, and the National Coalition for Health Professional Education in Genetics through funding by the Pew Charitable Trusts. April 2010.

For more information on civilian and military genetics policies, please review the following.

Baruch, S., & Hudson, H. (2008). Civilian and military genetics: Nondiscrimination policy in a post-GINA world. American Journal of Human Genetics, 83, 435–444.

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Special Interest Group Newsletter  August 2010
Position for Doctoral Nurse in Clinical Cancer Genetics Career Development Program

Position for Doctoral Nurse in Clinical Cancer Genetics Career Development Program

The City of Hope National Cancer Institute- (NCI-)designated comprehensive cancer center, located in Duarte, CA, is offering an interdisciplinary career development program in clinical cancer genetics and cancer prevention and control research. This is a mentored faculty position at a very competitive salary and provides opportunities for future NCI research support. (Note. This position qualifies for the National Institutes of Health Loan Repayment Program.)

Please send letter of inquiry and CV to: Jeffrey N. Weitzel, MD, Director, or Bernadette Pabillare, Program Coordinator, Clinical Cancer Genetics, 1500 E. Duarte Road, Duarte, CA 91010; EOE; Phone: 626-256-8662; Fax: 626-930-5495; E-mail: cgcdp@coh.org.

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Special Interest Group Newsletter  August 2010



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 discussions titled Survivorship Care Plans, “My Sister Won’t Let Me Tan”, Hospice Day 5: Part of Your World, Nurse-Managed Healthcare Centers: The Primary Care World Is Your Oyster!, and Lifestyle Changes. 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  August 2010

ONS Article of Interest
Five-Minute In-Service

In the latest issue of ONS Connect, the Five-Minute In-Service takes a look at how to Diagnose, Assess, and Manage Infusion Reactions, which appeared in the April 2010 issue of the Clinical Journal of Oncology Nursing.

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Special Interest Group Newsletter  August 2010

Membership Information

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Special Interest Group Newsletter  August 2010

Cancer Genetics SIG Officers

Coordinator (2010-2012)
Patricia Kelly, MS, RN, CNS, AOCN®
Dallas, TX

Ex-Officio (2010-2011)
Lisa Aiello-Laws, RN, MSN, APNG, AOCNS®
North Cape May, NJ


Nancy Roehnelt, PhD, RN, ANP, BC
Glen Ridge, NJ

ONS Copy Editor
Emily Nalevanko, MFA
Pittsburgh, PA

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View past newsletters.

ONS Membership/Leadership Team Contact Information

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

Carol DeMarco, Membership/Leadership Specialist

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