EARLY Act Opposition

July 13, 2009

United States Senator John Kerry
218 Russell Building
Washington D.C. 20510

Dear Senator Kerry:

The Jewish Community Relations Council of Greater Boston appreciates our long history cooperation on issues of concern to the Commonwealth of Massachusetts.  We are writing to express our concerns with a bill you recently co-sponsored, Senate Bill 994, The Education and Awareness Requires Learning Young (EARLY) Act sponsored by Senator Amy Klobuchar. 

The JCRC of Greater Boston feels this legislation, while well intended, is not based on scientific fact.  We have learned from breast cancer experts that there is no evidence to support that a young woman's risk of breast cancer is reduced by doing breast self-examination or changing risk factors at a young age. According to Susan Love, President of the Dr. Susan Love Research Foundation, "Breast self examination has been shown in large randomized controlled studies to have no effect on the detection or survival from breast cancer.  In addition, mammography screening has not been shown to be effective in women under 50 and in fact exposure to the radiation of mammograms in young women has been shown to increase the risk of breast cancers." 

Further, Dr. Leslie Bernstein, a nationally known epidemiologist and Brinker Awardee for her research in breast cancer risk factors further notes that, "It [the EARLY Act] takes for granted that risk factors for breast cancer in young women are firmly defined and are modifiable."  Dr. Bernstin has "spent nearly 30 years working to define novel breast cancer risk factors," and states that "what we know cannot be translated into appropriate action on the part of young women."

We are extremely concerned that screening young woman for breast cancer at an early age may actually cause more harm than good.  Paul Goldberg writes in the July 19, 2009 edition of The Cancer Letter, "If implemented, as written, it can

actually cause harm.  If implemented, a number of women will seek genetic testing and find out that they have 'mutations of unknown significance.' Some of these women will seek a bilateral mastectomy.  There are already scientific data to show that many women getting these messages will suffer significant emotional and mental harms."

In addition, we feel this legislation may have additional unintended consequences.  For instance, the EARLY Act encourages young women, "to talk to their medical practitioners about appropriate screening and surveillance, including available genetic testing and counseling." However, this legislation does not take into account that when these women seek to purchase life insurance, for instance, they will be asked whether they had a genetic test and the results of such tests.  The very same women this legislation aims to protect may be charged a higher rate or denied insurance.

The Genetic Information Nondiscrimination Act of 2008 (GINA) was enacted to assure that individuals could undergo genetic testing without fear of genetic discrimination.  To allay public concerns about genetic discrimination, it is necessary to prohibit the adverse treatment of individuals in numerous settings. Unfortunately, GINA does nothing to prohibit discrimination in life insurance, disability insurance, long-term care insurance, mortgages, commercial transactions, or any of the other possible uses of genetic information.

The Boston community has first hand experience in the effort to protect against these forms of discrimination.  A decade ago, research regarding BRCA genetic mutations in Ashkenazi women were reported by several media outlets and because of that, several hundred women from the Boston community became concerned about their privacy.   In response, the JCRC of Greater Boston spearheaded efforts to create a comprehensive genetic privacy law in Massachusetts.  After lengthy negotiation and lobbying, our community was able to provide some protection against the use of genetic information by life and disability insurance companies. For example, only genetic test results that are based on "actuarial sound principles" can be used in underwriting in Massachusetts.  However, for the much of the country the potential impact of this kind of discrimination for the Jewish community is real and would be intensified by the EARLY Act.   

Thank you for the opportunity to voice our concerns about the EARLY Act.  We would be happy to speak further with you about these issues.

Sincerely,

Nancy K. Kaufman
Executive Director