( CNN ) -- Imagine going in for a cancer screening , and the technician turns to you and says , `` We 're finished , but if I push this button over here , the machine can detect even smaller cancers . But here 's the hitch : You have to pay $ 700 if you want me to push this button . '' `` You 'd be enraged , '' says Ellen Matloff , director of cancer genetic counseling at Yale University Cancer Center . `` You 'd want to know why you have to pay extra to push that button . Why did n't they just do it right the first time ? '' Doctors and genetic counselors interviewed by CNN say that Myriad Genetics in Utah is doing something very similar with tests that determine if a woman has a potentially dangerous genetic abnormality linked to breast cancers . Most breast cancers do not seem to be genetic . Instead , they 're the result of cells gone wild for no apparent reason . However , some women get breast cancer because a bad gene runs in their families . When testing shows that a woman carries such a gene , she has a much higher chance of getting breast cancer . These women usually then get more frequent MRIs , ultrasounds and mammograms to detect a cancer , and sometimes even choose to remove their breasts to prevent a cancer from growing in the first place . Myriad owns the patent on breast cancer genes and so is the only company that can test for them . It offers one test that catches most , but not all , abnormalities , and then charges nearly all patients $ 700 for a second test that catches the rest . If a woman ca n't afford the $ 700 fee , she may miss an abnormality , which could mean the difference between life and death . `` What Myriad 's doing -- charging extra for this test -- is really sleazy , '' Matloff says . `` They 're collecting blood money off my patients . '' Myriad defends the $ 700 charge for its second test , called BART , even though many patients ca n't afford it and insurance wo n't pay for it . `` The BART test is based on different and separate technology , '' Rebecca Chambers , a Myriad spokeswoman , wrote in an e-mail to CNN . `` [ It 's ] based on a sophisticated new technology developed exclusively by Myriad . '' She added that Myriad is trying to persuade insurance companies to pay for the test and that it offers financial assistance to patients who meet certain criteria , and monthly interest-free payments to those why do owe the $ 700 fee . `` Myriad 's mission is to improve the patient 's quality of life and to save lives , '' she added in the e-mail . Understanding the furor . To understand the anger and bitterness that patients , doctors and genetic counselors harbor toward Myriad , it 's important to know the basics of genetic testing . In 1996 , Myriad offered its first test for breast cancer genetic abnormalities . Known as the BRCA test , it 's been revolutionary and has saved countless lives : If the test reveals that a woman has a genetic abnormality , it means she has a very high chance of getting breast cancer in the future , and some women then opt to remove their breasts as a pre-emptive strike against cancer . Women who test positive for BRCA also sometimes opt to have their ovaries removed , since having a breast cancer gene abnormality gives them a higher-than-normal chance of getting ovarian cancer as well . `` Genetic testing has been a godsend for so many women , '' Matloff says . Myriad calls its test the Comprehensive BRACAnalysis , but it soon became clear that it was n't truly comprehensive . It did not catch all genetic abnormalities linked to cancer , and so in 2006 , the company began selling BART , the newer test that catches genetic defects that the original test misses . Doctors and counselors expected Myriad to offer BART as part of its original test , but instead the company offers it separately and charges nearly everyone $ 700 to take it . `` This is so irresponsible of Myriad , '' says Molly Klein , director of genetic counseling at Piedmont Hospital in Atlanta . She and other genetic counselors have been fighting to get Myriad to stop the $ 700 charge . They say they worry that women who tested negative under the first test feel assured that they do n't have a bad gene when in fact they might , and would n't know they 're at increased risk for getting breast cancer . Klein and other genetic counselors say that when Myriad came up with an improvement in its colon cancer test , it wrapped it into its original screening at one price . The counselors say they think Myriad handled the breast cancer test differently , charging a separate fee , because it has no competition . `` From a business perspective , I guess I understand why Myriad is doing what they 're doing , because this is a good chunk of money for them , '' says Kristen Shannon , the senior genetic counselor at the Massachusetts General Hospital Cancer Center . `` But I feel really strongly that Myriad is doing the wrong thing . '' `` That accusation is incorrect , '' Chambers wrote in an e-mail to CNN . `` I 'm so angry '' For Eileen Kelly and Kathleen Maxian , money was n't the issue . The two sisters were stunned three years ago when Kelly was diagnosed with breast cancer at age 40 . They breathed a sigh of relief when Kelly tested negative for the BRCA gene using Myriad 's original test . This meant Kelly 's cancer was a fluke , and not something her sister or other relatives needed to worry about . Then two years later , at the age of 47 , Maxian found out she had ovarian cancer . Surgeons removed her ovaries and found the cancer had spread to her abdomen . After chemotherapy , the cancer came back a year later . `` I told my surgeon my sister had genetic testing , but it came back negative , '' Maxian says . `` My surgeon just hung her head down and shook it back and forth . I was like , 'What ? How weird is that ? ' `` The surgeon told Maxian that her sister 's test might have been incomplete . She instructed Maxian to ask her sister , who lives in Atlanta , to find out if she 'd received the second test , BART , in addition to the original breast cancer genetic test . Kelly found out she had not had not received BART . She went back to Piedmont Hospital to have it done , and the test was positive . Maxian and her father then had BART , and it turns out that they , too , carry a genetic abnormality . Women who have genetic abnormalities like Maxian 's have a 50 % to 85 % chance of getting breast cancer , and a 10 % to 40 % chance of getting ovarian cancer . She says that if her sister had had BART from the beginning , she also would have taken the test , and the positive result would have made her remove her breasts and ovaries `` in a minute . '' `` If BART had been done from the beginning , it could have saved Kathleen from getting ovarian cancer , '' says Dr. Nefertiti duPont , Maxian 's surgeon at the Roswell Park Cancer Institute in Buffalo , New York . `` It could have prevented my cancer , or at least caught it early , '' Maxian adds . `` Now my cancer is so advanced , I have only a 20 % chance of being alive five years from now . I 'm so angry . '' Klein , the genetic counselor at Piedmont Hospital , says she never mentioned BART to Kelly , nor to most of the women who came in for testing at that time . She says information from Myriad led her to believe that BART mutations were extremely rare among women like Kelly without an extremely strong family history of breast or ovarian cancer . When some women do have a very strong family history , Myriad will do a BART analysis for free as part of its original test , and has spent $ 20 million on these tests . `` We were left with the impression that BART was n't necessary for families like Eileen 's , '' Klein says . `` It just did n't seem urgent . '' But over time , it 's become clear that Myriad might have been wrong about who needs BART testing , counselors say . Several studies , such as one done by Shannon at the Massachusetts General Hospital Cancer Center , show that a substantial number of women had BART mutations even without a very strong family history . Now , Klein and others offer BART to all their patients , but many ca n't do it because of the cost . `` This is all really frustrating , '' Klein says . `` We know we 're missing women out there with BART mutations because they ca n't afford to pay . If you miss just one BART mutation , that woman could be in danger , and so could her mother , her sisters and her other relatives . '' `` It 's heartbreaking , '' says Mollie Hutton , Maxian 's genetic counselor at the Roswell Park Cancer Institute . `` It 's so sad that now Kathleen is fighting for her life when something could have been done to avoid it . It 's just crappy . '' Chambers , the Myriad spokeswoman , says studies show `` less than one percent of all women tested '' have a BART mutation . What to do when you get breast cancer genetic testing . If you 're about to get breast cancer genetic testing , specifically ask if you 'll receive BART testing . If you 've had breast cancer genetic testing , do n't assume you received the BART test . Also , do n't assume that the place where you had the testing will get back in touch with you to let you know about BART . CNN contacted four genetic testing centers , each of which did something different : One center quickly contacted all patients to tell them about BART ; another contacted only patients they considered high risk ; the third contacted patients three years after BART became available ; and the fourth still has n't contacted patients to tell them about BART . Genetic counselors recommend that you call the place where you had testing every year or so to see if there have been any improvements in the test . Most women will have to decide whether they want to spend $ 700 to get BART testing . Eileen Kelly wishes she 'd had the opportunity to spend that money . `` I 'm so mad at Myriad . It 's even hard just to talk about it , '' Kelly says , starting to cry . `` A test could have put the information in our hands that could have prevented my sister 's cancer . It 's frustrating and really hard to comprehend . '' Aaron Cooper contributed to this report .
Myriad Genetics owns the patent on breast cancer genes . Myriad offers one test that catches most abnormalities , then charges $ 700 for second . Company defends BART test , based on separate technology .