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. Greelys 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 NCIs Cancer Counseling Provider website
(http://cancernet.nci.nih.gov/pdq.htm#directories) and select genetic
counselors directory.