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Genetic testing for breast cancer varies across UK
Newsdesk
Genetic testing for breast cancer varies across UK the BRCA genes, despite guidance in 2004 from the UK National Institute for Health and Clinical Excellence that the whole gene should be tested. Testing of the whole gene is now possible, whereas previously only 60% of the gene could be tested in many laboratories. Although centres are required to retest samples, 17% of laboratories say that it will take 2 years to clear the backlog. “The implications for women who are being tested for only 60% of the gene are that the result may be judged uninformative, when in fact a BRCA gene mutation is present in the 40% of the gene that has not been tested”, says James MacKay (University College London, UK). Andrea Pithers (CancerBACUP) says: “Whilst some women understand that genetic testing is a complicated and laborious process compared to other simple blood tests, to some women this seems a long time to wait”. However,
Pithers remains hopeful. “It is likely that clinical services will improve as clinical teams and laboratory staff are working hard to achieve the government targets”, she concludes.
www.cancerbacup.org.uk/ geneticssurvey
Laura Barton
© Tony Craddock/Science Photo Library
Genetic testing for breast cancer varies widely across the UK, according to a survey by UK charity CancerBACUP. Some women wait 9 months for their first appointment with a geneticist; others have to wait up to 2 years for their test results. “For many women the level of anxiety will increase over time, especially if women want the information to make medical decisions in the near future”, notes Beth Pushkin (Georgetown University School of Medicine, Washington, DC, USA). A report by the UK government issued in 2003 states that by 2006 the results of diagnostic genetic tests should be available within 8 weeks of having the test. Of 19 regional genetics centres that responded to the CancerBACUP survey, only one had met this target. Furthermore, only 50% of moleculargenetics laboratories that responded to the survey test the entire sequence of
Women should not wait months for genetic testing
Family members have final say in treatment decisions Latin American women with breast cancer are greatly influenced by their family when it comes to making a decision about which treatment to choose. This reliance on their family could account for previously recorded differences in treatments and outcomes between ethnic groups (published online in Cancer Jan 9, 2006; DOI:10.1002 /cncr.21680). “Health-care providers need to acknowledge and educate Latin American patients’ family members as key participants in medical decision-making, rather than just as translators and providers of social support”, says Rose Maly, senior researcher of the US study (David Geffen School of Medicine, University of California at Los Angeles, CA, USA). Lisa Cooper (Welch Center for Prevention, Epidemiology, and Clinical Research, Johns Hopkins Medical Institutions, Baltimore, MD, USA) says http://oncology.thelancet.com Vol 7 February 2006
that the findings “substantiate what clinicians have suspected regarding the influences of cultural beliefs and role expectations on patients’ decisionmaking”. Maly and co-workers did a crosssectional survey of Latin American, African-American, and white women from Los Angeles who were newly diagnosed with breast cancer. They asked patients to say who made the final decision about their treatment, and noted that family members made the final decision about treatment for breast cancer in about half the women of Latin origin who had adjusted the least to US culture, and in about a fifth of those who were more acculturated. By contrast, fewer than 4% of AfricanAmerican and white women relied on their families to make the final treatment decision. “The authority of family greatly superseded that of physicians in making
the decision for Latin Americans, compared to other racial groups”, says Maly. Previous research has shown racial and ethnic differences in breast-cancer treatments and outcomes. Maly’s group reported that when family members had a role in making the final treatment decision, patients were most likely to have a mastectomy. “Family involvement may in part explain some of the differences in treatment that have been observed”, she adds. An understanding of how racial and ethnic differences towards treatment and outcomes link to the family might improve communication between patients and doctors. “The study makes a strong case for using provider interventions that target patient and familycentred communication as a strategy for overcoming disparities”, says Cooper.
Sarah Passey 113
Genetic testing for breast cancer varies across UK the BRCA genes, despite guidance in 2004 from the UK National Institute for Health and Clinical Excellence that the whole gene should be tested. Testing of the whole gene is now possible, whereas previously only 60% of the gene could be tested in many laboratories. Although centres are required to retest samples, 17% of laboratories say that it will take 2 years to clear the backlog. “The implications for women who are being tested for only 60% of the gene are that the result may be judged uninformative, when in fact a BRCA gene mutation is present in the 40% of the gene that has not been tested”, says James MacKay (University College London, UK). Andrea Pithers (CancerBACUP) says: “Whilst some women understand that genetic testing is a complicated and laborious process compared to other simple blood tests, to some women this seems a long time to wait”. However,
Pithers remains hopeful. “It is likely that clinical services will improve as clinical teams and laboratory staff are working hard to achieve the government targets”, she concludes.
www.cancerbacup.org.uk/ geneticssurvey
Laura Barton
© Tony Craddock/Science Photo Library
Genetic testing for breast cancer varies widely across the UK, according to a survey by UK charity CancerBACUP. Some women wait 9 months for their first appointment with a geneticist; others have to wait up to 2 years for their test results. “For many women the level of anxiety will increase over time, especially if women want the information to make medical decisions in the near future”, notes Beth Pushkin (Georgetown University School of Medicine, Washington, DC, USA). A report by the UK government issued in 2003 states that by 2006 the results of diagnostic genetic tests should be available within 8 weeks of having the test. Of 19 regional genetics centres that responded to the CancerBACUP survey, only one had met this target. Furthermore, only 50% of moleculargenetics laboratories that responded to the survey test the entire sequence of
Women should not wait months for genetic testing
Family members have final say in treatment decisions Latin American women with breast cancer are greatly influenced by their family when it comes to making a decision about which treatment to choose. This reliance on their family could account for previously recorded differences in treatments and outcomes between ethnic groups (published online in Cancer Jan 9, 2006; DOI:10.1002 /cncr.21680). “Health-care providers need to acknowledge and educate Latin American patients’ family members as key participants in medical decision-making, rather than just as translators and providers of social support”, says Rose Maly, senior researcher of the US study (David Geffen School of Medicine, University of California at Los Angeles, CA, USA). Lisa Cooper (Welch Center for Prevention, Epidemiology, and Clinical Research, Johns Hopkins Medical Institutions, Baltimore, MD, USA) says http://oncology.thelancet.com Vol 7 February 2006
that the findings “substantiate what clinicians have suspected regarding the influences of cultural beliefs and role expectations on patients’ decisionmaking”. Maly and co-workers did a crosssectional survey of Latin American, African-American, and white women from Los Angeles who were newly diagnosed with breast cancer. They asked patients to say who made the final decision about their treatment, and noted that family members made the final decision about treatment for breast cancer in about half the women of Latin origin who had adjusted the least to US culture, and in about a fifth of those who were more acculturated. By contrast, fewer than 4% of AfricanAmerican and white women relied on their families to make the final treatment decision. “The authority of family greatly superseded that of physicians in making
the decision for Latin Americans, compared to other racial groups”, says Maly. Previous research has shown racial and ethnic differences in breast-cancer treatments and outcomes. Maly’s group reported that when family members had a role in making the final treatment decision, patients were most likely to have a mastectomy. “Family involvement may in part explain some of the differences in treatment that have been observed”, she adds. An understanding of how racial and ethnic differences towards treatment and outcomes link to the family might improve communication between patients and doctors. “The study makes a strong case for using provider interventions that target patient and familycentred communication as a strategy for overcoming disparities”, says Cooper.
Sarah Passey 113