CCF Partners with Genetic Counselors

By Kelle Steenblock MS, CGC

CCF would like to announce a new relationship with Informed Medical Decisions (Informed). Informed is a genetic counseling company that specializes in hereditary cancer. CCF understands that an estimated 5-10% of colorectal cancers are caused by a hereditary gene mutation that is passed on in families, causing high risks for cancer. Prevention strategies are proven to reduce risk for families with hereditary colorectal cancer. However, due to the limited availability of board-certified genetic counselors, accessing these experts can be difficult for patients and physicians. Informed Medical Decisions makes genetic counseling more accessible and convenient for patients throughout the United States. CCF recognizes the importance of this access for its members and their families.

The Genetic Counseling Process

By Mary Freivogel MS, CGC

Genetic counseling helps a person determine if the cancers in their family could be hereditary. The genetic counseling process generally includes:

A comprehensive family history evaluation.
A detailed cancer risk assessment tailored specifically to the patient.
In-depth discussion of screening, prevention, and genetic testing options.
Coordination of genetic testing with health care provider (if desired and indicated).
Follow-up consultation to discuss genetic test results and implications for the patient and other family members (if necessary).
A detailed summary letter mailed to the patient and their health care provider.

Informed Medical Decisions

By Kelle Steenblock MS, CGC

Informed Medical Decisions (Informed) offers telephone-based genetic counseling services providing comprehensive genetic counseling by board certified genetic counselors to individuals and families at risk for hereditary colorectal cancer. Due to the nationwide shortage of genetic counselors, many individuals and families at risk for hereditary colorectal cancer do not have access to these genetic experts. Informed provides comprehensive genetic counseling, discussion of genetic testing options, coordination of genetic testing (when appropriate) with the individuals personal physician and follow-up that includes formal recommendations for cancer screening and risk reduction.

How it works:

The patient visits www.informeddna.com to complete a prescreening questionnaire (no cost or obligation).
The online tool notifies the patient if there is a potential increased risk for hereditary cancer.
The patient schedules a telephone appointment online and then completes their personal and family medical history through an online collection tool.
The patient receives genetic counseling via telephone with a board-certified genetic counselor.

Informed is currently contracted with Aetna to provide cancer genetic counseling services to its members. For Aetna members genetic counseling through Informed Medical Decisions is a covered benefit (specialty co-pays and any unmet deductible may apply). For individuals without Aetna health insurance, the cost of Informed Medical Decision’s comprehensive online and telephone cancer genetic counseling service is $375.00.

Indications for Genetic Counseling

By Mary Freivogel MS, CGC

Anyone who has concerns about how their personal and family history of cancer affects them or their relatives can consider genetic counseling. The following are “red flags” for hereditary colorectal cancer, whether they appear in you and/or in a relative:

Cancer diagnosed prior to age 50, especially colorectal or endometrial/uterine
Colorectal cancer and numerous colorectal pre-cancerous polyps (“adenomas”)
2 or more family members with the same type or related types of cancer**
2 or more of the same type or related type of cancers** in a patient

**Related types of cancer include: colorectal, endometrial/uterine, ovarian, and stomach

Why is Genetic Counseling Important?

By Mary Freivogel MS, CGC

If a hereditary colorectal cancer syndrome exists in a family, certain relatives who inherited the syndrome will be at a very high risk for colorectal and, in some cases, other cancers. It is important to identify these individuals so that they can have earlier and more frequent screening for cancer. Additionally, there are other medical management options available to them that wouldn’t be recommended otherwise. These additional measures can significantly decrease their risk of getting cancer. For these individuals, knowing about the hereditary syndrome is truly preventive. It makes them aware of their cancer risks and allows them to do something to prevent cancer from happening to them.

In most cases, there are specific known genes that are responsible for hereditary colorectal cancer syndromes. Laboratory tests are available to look for mutations in these genes. They usually require a blood draw. It’s best to start the genetic testing in an affected member of the family, if possible (i.e. someone who has been diagnosed with cancer or colorectal polyps). However, there are other ways of doing genetic testing in unaffected members of the family and, in some cases, additional studies may be done on tumor tissue from an affected relative.

A cancer genetic counselor is a healthcare provider with special training in genetics and cancer who can guide you and your family in your genetic testing decisions. These professionals will evaluate your family history, discuss options for genetic testing, and explain the benefits and limitations of this type of testing. They will also help with interpreting any genetic test results and making subsequent recommendations for cancer screening and risk reduction.

Genetic Information Non-Discrimination ACT (GINA)

By Kelle Steenblock MS, CGC

On May 1st 2008, the Genetic Information Non-discrimination Act (GINA) which is designed to protect individuals from health insurance and employment discrimination as a result of genetic information passed the House and Senate. On May 21st GINA was signed into law by President Bush. The following is an outline of how the new law will provide protection from each type of discrimination:

Health Insurance Discrimination:

prohibit enrollment restriction and premium adjustment on the basis of genetic information;
prevent health plans and insurers from requesting or requiring that an individual take a genetic test;
prevent health plans and insurers from pursuing or being provided information on predictive genetic information or genetic services prior to enrollment – the time when this information is most likely to be used in making enrollment decisions;
cover all health insurance programs, including those regulated by the federal government under ERISA, state-regulated plans, Medigap, and the individual market.

Employment Discrimination:

prohibit discrimination in hiring, compensation, and other personnel processes;
prohibit the collection of genetic information, and allow genetic testing only to monitor the adverse effects of hazardous workplace exposures;
require genetic information possessed by employers to be confidentially maintained and disclosed only to the employee or under other tightly controlled circumstances;
cover employers, employment agencies, labor organizations, and training programs.

(This summary was prepared by the staff of the Senate Committee on Health, Education, Labor and Pensions.)

Hereditary Colorectal Cancer Syndrome Links

Myriad Genetic Laboratories, Inc.
http://www.myriadtests.com/colorectals.htm

Johns Hopkins Hereditary Colorectal Cancer Website
http://hopkins-gi.nts.jhu.edu/pages/latin/templates/index.cfm?pg=disease1&organ=6&disease=38&lang_id=1

Huntsman Cancer Institute’s Familial Colon Cancer Registry (FCCR) Newsletters
http://www.hci.utah.edu/cancerInformation/newsletter.jsp

Susie's Cause
ColonCancerFoundation.org
201 North Charles Street
Suite 2404
Baltimore, Maryland 21201