“What Would You Do if You Were Me?” Effects of Counselor Self-Disclosure Versus Non-disclosure in a Hypothetical Genetic Counseling Session

Abstract

Two prior studies suggest genetic counselors self-disclose primarily because patients ask them to do so (Peters et al., 2004; Thomas et al., 2006). However, scant research has investigated effects of counselor disclosure on genetic counseling processes and outcomes. In this study, 151 students (98 undergraduates, 53 graduates) completed one of three surveys describing a hypothetical genetic counseling session in which a patient at risk for FAP was considering whether to pursue testing or surveillance procedures. Dialogue was identical in all surveys, except for a final response to the question: “What would you do if you were me?” The counselor either revealed what she would do (Personal Disclosure), what other patients have done (Professional Disclosure), or deflected the question (No Disclosure). Imagining themselves as the patient, participants wrote a response to the counselor and indicated their perceptions of her. Participants rated the non-disclosing counselor significantly lower in social attractiveness than either disclosing counselor, and less satisfying than the professional disclosing counselor. Analysis of written responses yielded four themes: Made Decision, Sought Information, Expressed Thoughts/Feelings, and No Decision. Practice implications and research recommendations are provided.

Appendix

Definition of Genetic Counseling (Source Resta et al. 2006)

Genetic counseling is the process of helping people understand and adapt to medical, psychological, and familial implications of genetic contributions to disease. This process integrates the following:

• Interpretation of familial and medical histories to assess the risk of disease occurrence or recurrence.

• Education about inheritance, testing, management, prevention, resources, and research.

• Counseling to promote informed choices and adaptation to the risk or condition

In the following scenario and dialogue, please imagine that you are the patient.

Scenario: Many people in your family have had cancer. Your mother was diagnosed with colon cancer due to the presence of thousands of polyps or precancerous formations in her colon when she was 42 years old. Her doctor says her cancer is the genetic kind of colon cancer, also known as FAP (familial adenomatous polyposis). You are told that you are at risk for developing the same disease, but there are procedures that can be done to minimize your risk of developing cancer. You schedule an appointment with a genetic counselor to discuss your family history, your risk, and possible genetic testing. The counselor has just introduced herself to you and the session begins as follows:

Please note that the following is simply the beginning of a session that could last an hour. Additionally, multiple sessions are typically needed to address all of the patient’s needs.

Dialogue:

Counselor: Please have a seat (pause). Could you tell me your understanding of why you’re here today?

Patient: Well my mother was recently diagnosed with FAP; her doctor sent me here to get gene testing for the disease. I wanted to talk to you about testing so I can figure out what to do.

Counselor: I'm sorry to hear about your mother. It sounds like you'd like to put all the information together before making decisions.

Patient: Yeah that's right.

Counselor: To begin I'd like to take a family history. This is to make sure I have all the information to calculate your risk. How does that sound to you?

Patient: Sure, I'm not the best family historian, but I'll try.

Counselor: Ok. First can you tell me about any other cancer that your relatives have had.

Patient: Well, my mom’s mom died from cancer and I think two of my mom’s aunts and uncles had cancer and died from it.

Counselor: Do you know what kind of cancer they had and when they were diagnosed?

Patient: I think they were all colon cancer, probably in their late thirties or early forties. But, I think my grandma had both colon cancer and then breast cancer later on.

Counselor: Do you know anything about your grandmother's parents, such as how they died or when?

Patient: They both died before I was born. I think my mom said they died in a car accident when she was a kid.

Counselor: That must have been hard for your mom.

Patient: Yeah, she doesn't talk about it much.

Counselor: You can see from your family history, the pattern suggests you are at a higher risk of developing colon cancer.

Patient: Yeah, I thought so and I'm pretty nervous about that.

Counselor: You are at a higher risk, but there are some things we can do about it. We can talk about testing options. As you know FAP is an inherited form of cancer. If a parent is affected a child is at a 50% risk

Patient: Wow that seems high. (pause/silence)

Counselor: This information can be frightening, but testing is available and would give you a definite answer regarding whether you have the disease or not.

Patient: What does the test consist of?

Counselor: The test is a simple blood test. The results take about three weeks to come back and you would meet with me again to go over them.

Patient: Ok

Counselor: From your perspective it probably seems like everyone who has this dies and that's not true. If you get a positive test result, meaning you also have the gene, prophylactic measures (or procedures to prevent the developing cancer) can be taken. These include a yearly colonoscopy to check for polyps which are precancerous formations, additionally if polyps are found pieces of your colon can be removed to prevent the polyps from turning into cancer. These measures can help prevent you from dying from colon cancer.

Patient: Wow! This just doesn't seem real. I mean my mom didn't get cancer until she was 42. What would you do if you were me?