With evidence suggesting that Ashkenazi Jewish women are five to 10 times more likely than other women to be born with a mutant gene associated with breast cancer, Columbia Universityís College of Physicians and Surgeons is preparing a booklet to help such women decide whether to undergo genetic testing.
"There are legal and social issues that a woman may wish to consider," said Sherry Brandt-Rauf, associate research scholar at the schoolís Center for the Study of Society and Medicine.
"Many women fear negative insurance and employment consequences for themselves and their children if they are tested," she said. "They are not always familiar with the fact that in some cases there is legal protection for them. It all depends on the state they are in. New York has some protections, but many think they donít go far enough."
Under the New York law, Brandt-Rauf said insurance companies are barred from drawing inferences about the genetic makeup of the woman’s family.
"But many women are unfamiliar with the fact that this law exists," she said.
The booklet, which Brandt-Rauf is preparing with a $22,000 grant from the Jewish Women’s Foundation of New York, will explore these and other implications should a woman’s genetic tests reveal the presence of the mutant gene.
She pointed out that the three most common mutant genes, known as BRCA mutations, are found in about 2.2 percent of all Ashkenazi Jewish women. It is believed that 40 percent of those with the mutation will develop breast cancer. "The 40 percent figure was the one used repeatedly at a National Institute of Health conference [last month] in Bethesda, Maryland," said Brandt-Rauf. "But it is hard to get broad-based population studies that reflect Ashkenazi Jewish women as a whole because people who have family or personal histories of breast cancer are the ones most likely to participate in research studies."
As a result, Brandt-Rauf added, these statistics must be put into context.
"The statistics are complex, slippery and in dispute," she explained. "And the area is new. It has been only five years since the association between the mutations and breast cancer was discovered. Women who are trying to make clinical decisions in this environment are drowning in an excess of slippery statistical data."
The 30-40-page booklet she is preparing should be ready for evaluation in about six months. Brandt-Rauf said it would "provide Ashkenazi Jewish women with clear and accurate information about the decision to undergo genetic testing for these three mutations. It will have the information they need to make intelligent decisions that are right for them."
She added that those considering the testing should first consult with a cancer genetics counselor.
The booklet will be free and available from the schoolís web site, www.societyandmedicine.org.
This was one of three projects recently funded by the Jewish Women’s Foundation of New York in keeping with its theme this year of providing support for women’s mental and physical health issues, according to the foundation’s founder and president, Arlene Wittels. "Last year we focused on the economic advancement and empowerment of women, and the previous year we provided an emergency grant to help immigrant women who were in danger of losing government aid because of the new immigration laws," she said.The foundation, which now has 118 members, was founded four years ago and has been making grants for the last three. The amount of grant money disbursed has increased in value each year as membership has grown and the organization’s endowment increased. The first year, $25,000 was granted, last year $43,000 and this year $60,000.
A second recipient this year was the Union of American Hebrew Congregations, the congregational arm of the Reform movement. It received a grant to support its informational campaign about the ravaging effects of eating disorders. It is aimed at 11- to 18-year-old Jewish girls.
Also receiving a grant was the Jewish Community House of Bensonhurst to support its Girls CHATroom (Creating Healthy Attitude for Teens), which helps teenage girls from the former Soviet Union deal with adolescence and the difficulties in adapting to a new country and culture. The program holds discussions and seminars on physical, mental, reproductive and sexual health issues.
Joan Wachtler, co-chair of the grants committee, said funding requests were received this year from 41 organizations, compared with 12 last year.
"We addressed a variety of issues covering a broad range of programs offered by three different kinds of agencies," she said. "Each one will affect a large and varied population of Jewish women and girls."
The foundation, which itself received a start-up grant from UJA-Federation of New York and has an office at the organization’s Manhattan headquarters, solicits funding requests from a wide variety of institutions and organizations, many having no connection with UJA-Federation.
"We have really broadened our base," said Wachtler. "Last year we sent out more than 100 requests for proposals."
Of the six grants issued to date, four have been to UJA-Federation recipients.
To join the foundation, a Jewish woman must pledge to contribute $10,000, payable over five years. Each member then helps to determine which projects to support. For further information, call (212) 836-1106.