Expertise of Genetic Counselors Clarified

In his article, "Genetic Testing for Cancer Susceptibility: Challenges for Creators of Practice Guide-lines" [11(11A):171-176, 1997], Henry Greely, JD, provides a comprehensive review of the complex issues that patients consider when deciding whether to pursue genetic testing for cancer susceptibility. We support Dr. Greely’s position that practice guidelines for genetic testing for cancer susceptibility must demand that providers of education and counseling be competent. We take exception, however, to his comments that genetic counselors have "little expertise in cancer genes or in dealing with adults as patients."

Genetic counselors are health care professionals who help patients and families comprehend and incorporate complex medical information about genetic conditions in a personally meaningful manner, often as part of a decision-making process. In that role, counselors have considerable expertise in dealing with adults. Regardless of the area in which they most commonly practice, genetic counselors work with adults who are parents of children affected with genetic diseases, prospective parents seeking reproductive counseling, and patients affected with or at risk for a variety of adult-onset conditions.

Genetic Counselors Are Well Versed in Cancer Genetics

With respect to the comment that genetic counselors have little expertise in cancer genes, we submit that, as a professional group, genetic counselors may be the most knowledgeable about this area. The National Society of Genetic Counselors (NSGC) has sponsored numerous educational opportunities for the general membership on cancer genetics and genetic testing for cancer susceptibility, including two dedicated short courses, one in 1993 (the year before the cloning of the BRCA1 gene) and another in 1997, which was attended by over 400 genetic counselors. In addition, annual plenary sessions, workshops, and symposia on cancer genetics and related issues have been presented at the national and regional educational conferences. Topics have included family history assessment, pathologic and medical data consideration, epidemiology, screening and prevention, and ethical and legal issues. Although these educational efforts may not grant comprehensive expertise, they ensure that the attendees are well versed in the fundamentals of cancer genetics.

Cancer Genetic Counseling Special Interest Group

In addition, the NSGC supports a Cancer Genetic Counseling Special Interest Group, which includes 275 members, most of whom also participate in an active listserv Internet discussion group to share information and obtain input from colleagues throughout the country daily. Many members of this group provide comprehensive cancer risk counseling and play a pivotal role in the provision of genetic testing for cancer susceptibility, often as members of a multidisciplinary team, which also includes oncologists, geneticists, surgeons, mental health providers, and nurses.

Thus, we believe that many genetic counselors are uniquely qualified to provide comprehensive genetic counseling for patients undergoing genetic testing for cancer susceptibility. A list of cancer genetic counselors can be obtained from the National Society of Genetic Counselors Executive Office at 233 Canterbury Drive, Wallingford, PA 19086, or through the NCI’s Cancer Counseling Provider website (http://cancernet.nci.nih.gov/pdq.htm#directories) and select genetic counselors’ directory.

The Author Replies

Of course, an increasing number of genetic counselors do have extensive knowledge and experience in dealing with cancer genetics and with adult patients. Another useful list of cancer genetics counselors can be found in the booklet, "Cancer and Genetics: Answering Your Patients’ Questions"* (1997) published by the American Cancer Society and PRR, Inc. I have the greatest respect for trained genetic counselors; my point was simply that one cannot expect any genetic counselor to be able to do a competent job with cancer genetics, just as one cannot expect that from any oncologist or surgeon. Similarly, as a parent, I know that I react quite differently to my children’s health issues than to my own. One cannot assume that a genetic counselor’s experience with adults as parents helps enormously in dealing with adults as patients.

I am confident that the authors of this letter and I agree on the fundamental point that I was trying to make: Counseling by qualified and skilled professionals is essential to clinical cancer genetics. Those professionals will often be genetic counselors, but genetic counselors with special background and training in cancer genetics.

Henry T. Greely, JDProfessor of LawStanford UniversityStanford, California

*The booklet is available from PRR, Inc., 48 South Service Road, Melville, NY 11747. The price is $15.95 plus $3.00 shipping.