Genetic Counselors May Prepare Us for Bad News
> 3/21/2008 7:37:11 AM

While the science of genetic predictions is still in its infancy, more than 1,100 tests are currently marketed as tools that can assess the risk of a variety of health problems. The New York Times has already run numerous stories this year about the worry that these tests are causing. In January, a federal advisory panel warned that there is inadequate oversight of these tests. The accuracy of many of them remains unconfirmed, and even accurate tests can be easily misinterpreted. If consumers are savvy enough to factually understand the results, they still might not be prepared to emotionally handle them. That is where the emerging field of genetic counseling comes in.

Do-it-yourself genetic tests are simple and increasingly cheap. For a few hundred dollars, anyone can swab their cheek and mail it in to a laboratory for testing. A few weeks later they will receive a letter with their results. This letter may tell you that you have little to worry about, or it may break the news that you are almost certainly going to develop a devastating illness like Huntington's Disease. Receiving such news with as much equanimity as possible requires mental preparation and advice on how to best incorporate the knowledge into your life.

Genetic counselors can help patients put the risk into perspective, deal with their fears, and then discuss their fears with loved ones before deciding on a course of action. Left to handle the news without adequate support, patients might deal with their fears in extreme ways such as immediate double mastectomy or complete denial. As many patients are afraid to reveal their results, for fear that their insurance companies will find out and drop their coverage, they would have to suffer alone if they could not speak to a genetic counselor.

Mail-in genetic tests can reach anywhere in the country, but genetic counselors are not numerous and dispersed enough to meet with every person who needs them. That is why a large study by the Lombardi Comprehensive Cancer Center on the viability of phone counseling is so important. This study, which has just begun recruiting participants, will compare the effectiveness of in-person and phone counseling for women receiving the results of the BRCA1/2 mutation test. Dr. Beth Peshkin, senior genetics counselor at Lombardi, explained the significance of her experiment in a press release:

In anticipation of this increased demand, it is imperative we find alternatives to traditional genetic susceptibility counseling and that we develop and evaluate these possible options now. A successful alternative would be one that effectively delivers information but allows greater accessibility, such as telephone counseling.

We will intently follow the results of this comparison study. Dr. Peshkin has a solid record of revealing crucial points about the way that genetic information is disseminated, such as this recent exploration of the conversations that mothers have with their husbands and children about cancer risk, so she is well qualified to investigate the effectiveness of dispensing information and advice over the phone. Genetic tests will undoubtably become more popular, so it is imperative that we find some way to prepare people for bad news.

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