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Shortage of Genetics Counselors May be Anecdotal, but Need is Real

Rosenthal, Eric T.

doi: 10.1097/01.COT.0000297237.14764.14

Myriad Genetics' BRACAnalysis Awareness Campaign to educate women about hereditary risks of breast and ovarian cancer by asking their doctors about BRCA1 and BRCA2 testing is primarily geared toward steering them to primary care physicians—internists, family practitioners, and gynecologists—for both the blood test and pre- and post-counseling.

Although reference is made to genetic counseling, the thrust of the physician education marketing plan concerns making use of available related CME courses offered by medical societies, and an AMA monograph on risk assessment for hereditary cancer syndromes supported through an independent educational grant from Myriad.

OT spoke with several health care professionals and cancer advocates about the campaign itself and the lack of focus on family risk-assessment programs and genetics counselors that have traditionally been the most appropriate referrals for individuals with potential hereditary cancer risks.

Catherine Wicklund, MS, CGC, is President of the National Society of Genetics Counselors (NSGC) and Director of the Graduate Program in Genetic Counseling at Northwestern University and a member of the Department of Obstetrics and Gynecology.

During a phone interview she said that the Society had been informed about the campaign, but was not consulted.

She said she believed that Myriad had notified most professional societies that would potentially be affected by the marketing roll out.

“We made it perfectly clear with Myriad and they understood that by them informing us in no way meant we were endorsing or not endorsing or taking any position on the campaign itself.

“Our members feel very differently about these sorts of things. It's a very controversial topic. We don't really have an official position on it. As a professional society we can see there are some pros and cons to direct-to-consumer advertising, and our biggest thing is how we can help consumers wade their way through these complicated issues.”

She said genetics counselors basically help people when they are being approached about this kind of testing, providing guidance on what type of questions to ask, who they should see, and what do they need to move forward.

“We want them to ask about the accuracy of the test, what does it tell them, is it going to change their medical management? Are there going to be results that are gray or ambiguous? It is imperative that they should be asking all those questions up front before deciding to have any of these genetic tests.”

NSGC has about 2,300 members out of a total of 3000 genetics counselors nationwide. Genetics counseling requires a master's degree with a combination of coursework in molecular genetics, epidemiology, medical genetics, psychosocial issues, and counseling. The CGC designation indicates board certification from the American Board of Genetics Counselors.

There is no separate certification for cancer, and about half of all NSGC members provide some cancer genetics counseling, with some specializing in it, Ms. Wicklund said.

“There's been much talk about the shortage of genetics counselors but there's no data to support that shortage,” she said. “It's out there as if you couldn't find a genetics counselor or won't be able to see one, and that just simply is not true. There are a lot of people who do feel there could be or will be a shortage of genetics counselors given the amount of genetic information that's out there and that different testing that will be available but we really don't have any data to say that that's true, and so it's a nebulous thing.

“Right now given the demand that patients have to see us, we feel we are currently meeting those needs.”

She added that the counselors might be concentrated in academic centers and hospitals, and might be in shorter supply in rural areas, but said many provide satellite clinics and are available by phone.

Also asked for her opinion, Jill E. Stopfer, MS, GCC, Familial Cancer Coordinator of the Cancer Risk Evaluation Program at the University of Pennsylvania Abramson Cancer Center, said, “I think this whole outreach and awareness about genetic testing and things to do about it, is a mixed bag—not all good or all bad.

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“I don't support willy-nilly testing of inappropriate people, and maybe this will be reined in by insurance issues. Testing should help, not hurt people, and it is complex enough if done in the right way. Genetics counselors are interested in patients getting the right information. Imagine getting the test results back and something is problematic. Decisions can be made that are irrevocable.”

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Living Beyond Breast Cancer

Elyse S. Caplan, MA, Education Director for Living Beyond Breast Cancer (LBBC), said she'd been contacted by Myriad about arranging a meeting during the ASCO Annual Meeting in June.

She told OT the meeting was similar to most outreach efforts that industry engages in with cancer advocacy and educational organizations at national conferences.

She met with two Myriad representatives who were both genetics counselors and product managers, and discussed LBBC's mission and programs, while learning more about Myriad and the awareness campaign they were planning to roll out later that year.

“It's really very important for some women to get a better understanding of what genetic testing and counseling are, since they can play a vital role in providing a better understanding of risk to help women determine what they can do to reduce their risk.

“Women should get as much information as possible before being tested so they are prepared for the medical, emotional, psychological, and other issues they may confront when they get the results of the blood test.”

She said LBBC tries to educate women about genetic risk and testing, and helps them formulate appropriate questions to ask their health care providers, noting that it's important that those providers have the special training and expertise needed for complete and individualized counseling.

However, she added, most of the women who call LBBC's Survivors' Hotline are cancer survivors, and have oncologists who can provide additional referral.

“I'm concerned about women who think they might be at risk going directly to primary care physicians who do not have the appropriate built-in infrastructure consisting of genetics counselors or other experienced professionals,” she said.

Myriad's Web site includes a video about women sharing their stories about making informed decisions about testing and management for hereditary breast and ovarian cancer.

The video features Selma R. Schimmel—CEO of Vital Options International and host of the “Group Room” radio show—with whom I have worked in the past.

I called Ms. Schimmel, who is BRCA1-positive and a survivor of both breast and ovarian cancers, and noted that the Myriad campaign was encouraging that questions about hereditary cancer risks be directed to primary care physicians.

She said she'd taped the video about a year and a half ago when she was undergoing chemo for a second bout with ovarian cancer, and was passionate about genetic testing but also adamant about having genetics counselors involved both before and after the tests.

“If a physician says someone should be genetically tested and doesn't say they should also see a genetics counselor, it's criminal. If you get results, then go back and see a genetics counselor.

“I also have an issue with men not getting tested,” she said. “Men need to understand it's a 50/50 thing, and that it's important to know the history on the father's side too, since family members might also be at risk for colon, prostate, or pancreatic cancers.”

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Smoking Increases Risks for Head & Neck Cancers for Both Men & Women

Smoking significantly increases the risk for head and neck cancers for both men and women, regardless of the anatomic site, according to the results of a large prospective study in the October 1 issue of Cancer. While tobacco use has long been identified as an important risk factor for head and neck cancers, the new study finds that smoking plays a greater role in the development of head and neck cancer in women than men.

Neal D. Freedman, PhD, MPH, from the NCI and co-investigators analyzed data from 476,211 men and women prospectively followed from 1995 to 2000 to assess gender differences in the risk for cancer in specific head and neck sites. Analysis showed that the risk of smoking leading to any type of head and neck cancer was significantly greater in women than in men. While 45% of these cancers could be attributed to smoking in men, 75% could be attributed to smoking in women.

“Incidence rates of head and neck cancer were higher in men than in women in all categories examined,” the authors said, “but smoking was associated with a larger relative increase in head and neck cancer risk in women than in men.” To reduce the burden of head and neck cancer, public health efforts should continue to aim at eliminating smoking in both women and men.

© 2007 Lippincott Williams & Wilkins, Inc.
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