Letter to the Editor: BRCA1 Testing

Dear Editor:

Your brief article on BRCA1 testing in the November/December 1996 issue of the Newsletter is misleading. Rather than presenting the facts so that women may judge for themselves, the article (and the Massachusetts Breast Cancer Coalition handout upon which it is based) prejudges the value of the test. For example, the statement that having the BRCA1 mutation "simply means that you have one of many possible factors which may increase your likelihood of getting breast cancer" encourages the impression that the mutation has the same order of effect as factors such as exercise or age at child-bearing. This is clearly untrue. No other factor has been demonstrated to carry the approximately 85% risk level implied by the BRCA1 mutation. Women should know the magnitude of risks and judge for themselves the implications. Neither physicians nor women's health activists should make these judgements for others. Similarly, the statement that "currently there is no known effective prevention for breast cancer" is also misleading. While the statement is true, it ignores the fact that women may make alternative decisions about monitoring for breast cancer based on their own risk factors and they may choose to alter diet and exercise patterns in the hope that this may have some impact. While I agree that the potential advantage of the test to an individual is relatively limited, the National Women's Health Network and other groups should not tell women what decision to make, nor provide grossly slanted information that encourages particular decisions. Instead, the Coalition and other groups should be seeking to provide women balanced and broad information so they can make their own decisions. Women do not need another group of self-proclaimed experts making decisions for them.
Celeste M. Condit
Professor

P.S. I am co-editor of Women's Health Messages: A Resource Book, with Roxanne Parrott (Sage, 1996). I have done work in genetics under the aegis of the University of Georgia's Study in a Second Discipline Program and have been a Visiting Investigator at NIH. I have published articles on genetics issues in the journals Health Communication, Communication Studies.

Dear Dr. Condit:

Thank you for your feedback on our article about BRCA1 testing. We always appreciate comments, even if our readers disagree. One of the purposes of our newsletter is to provoke debate.

I've read your letter carefully and do agree with one of your points. You argue that the statement "having BRCA1 simply means that you have one of many possible factors..." gives the impression that the risks associated with BRCA1 are on the order of those associated with reproductive factors. I think that you are right, and that our readers would have been better served if we had included the factual information that BRCA1 is associated with an 85% likelihood of developing breast cancer in the families studied so far.

However, I don't agree with your comment that our purpose should be to present the facts without expressing our own opinion. While we agree with you that women should make the decision themselves, (a core belief of our organization!), we also believe that our membership does want to know our opinion about controversial issues. But your point is well taken that women should make their own decision based on all the facts and in this case we didn't do as good a job as we should have in presenting all the facts. Thanks again for your feedback. I hope you will continue to read our newsletter and stay in touch with us.
Cynthia A. Pearson
Executive Director