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Exercise 2: Promoting Patient Autonomy (Informed Consent)
The purpose of providing consent is to enhance patient autonomy. Ideally, the
counselor- patient relationship is a collaborative one in which the counselor attempts
to understand patient expectations and explain how the counseling session will
proceed.
Consider the following questions:
- What three things might patients want to know about the purpose of genetic
counseling? - What might they want to know about the process and outcome of genetic
counseling? - What might they want to know about you (assume you are still in a student role)?
- What would you tell them about the limits to confidentiality?
- What would you want to know if you were the patient?
Create a checklist of items you will discuss with patients so that they are informed
about genetic counseling. Next, compare your checklist with that of another student,
and then create a combined list of items to describe genetic counseling.
Exercise 3: Addressing an Ethical Dilemma
Using the MORAL model grid in Table 13.1, list every option you might have to
define and address for the ethical dilemma described in the case example below. At
the top of the grid, list the ethical principles you would like to address in your
response: For example: “I want to act in such a way that to ensure that I am not doing
harm to my patient...” Then list practical considerations, such as the availability of
a test, reimbursement, or legal concerns that also must be considered. Work through
the MORAL model grid. Select the option you would choose, and the rationale,
based on ethical principles and practical considerations, for your decision.
Case Example
A 4-year-old girl, Emily, is evaluated in your genetics clinic. Emily has unexplained
developmental deficits. Previous evaluation included a normal karyotype and nega-
tive fragile X testing. Emily’s mother, Sue, is 31 years old, and her father, John, is
32 years old. This is the couple’s first child. In reviewing the family history, you
obtain the following information: Sue has two sisters, ages 28 and 26. Her mother
died at age 49 of breast cancer. Her sisters each have two children with no growth or
developmental problems. John’s parents are both alive and well. He was an only
child, but his mother experienced two early miscarriages. Sue is eager to learn the
cause of Emily’s developmental deficits. She is also interested in learning if they
have an increased risk for having other children with similar developmental prob-
lems. Sue has heard about whole exome sequencing (WES) and is specifically
requesting this testing for Emily. Sue mentions that her family is not supportive of
this testing. Her sisters have expressed that Sue should just “accept Emily’s
13 Professionalism: Ethically Based Reflective Practice