I'd like to thank Susan Salladay for her thoughtful comments about genetic testing for inheritable illnesses such as Huntington disease, a rare, complicated genetic disorder. (“Not Looking for Trouble,” Ethical Problems, October, 2013).* When caring for affected families, nurses shouldn't underestimate the importance of formal genetic counseling with credentialed genetics professionals, such as masters-prepared genetic counselors and advance practice nurses with a genetics credential (APNG).
During the genetic testing process, genetic professionals discuss any issues and ramifications testing can have for the patient and the rest of the family, as well as issues related to disclosure of information to at-risk family members. Legally and ethically, a genetics professional or other healthcare provider can't disclose test results to others without the patient's permission. Preparing patients to self-disclose sensitive information, if appropriate, is an integral and time-consuming component of the genetic testing process.
Genetics professionals are educated to coordinate care for the entire family. Before testing, genetics professionals help develop a plan for how patients will inform other at-risk family members because careful pretest counseling can often prevent ethical conflicts when test results become available. For all these reasons, families in these situations are best managed by genetics professionals.
Years of complications
As an oncology nurse, I enjoy meeting and caring for new cancer patients and their families. Helping them navigate through chemotherapy, radiation therapy, and biotherapy is very rewarding. What I find frustrating, though, is hearing patients repeat the same story: “I was diagnosed 2, 4, 8 years ago, but didn't come in for treatment.” My question is “Why?” The answer is usually, “I don't know.”
Perhaps the solution is reaching out to nurses in different fields. We're at our best when we're assessing and teaching. To get the right answers, we need to ask the right questions. For months I asked one of my patients if he was having any adverse reactions to chemo and he always said “no.” Then one day I specifically mentioned blisters and he reported for the first time that he'd had blisters for months.
Patients try so hard to be “good”; they don't want to bother anyone. If nurses educate the public about treating cancer sooner, we'll lose fewer patients later.
—SUZANNE M. MAHON, DNSC, RN, AOCN, APNG
St. Louis, Mo
—DIANA KUZLIK, BSN, RN, OCN
Orland Park, Ill.