367Genetic counselors draw upon many resources to help them sort out what to do
when facing ethical dilemmas. Strategies used by clinical genetic counselors (Bower
et al. 2002 ) include:
- Further discussion with patient: to clarify possible implications of test results,
the patient and/or family situation, and policies regarding testing. - Consulting with a health professional: consulting with genetic counselors, other
health-care professionals (depending on the expertise needed), and an institu-
tional ethics committee for help with defining and resolving ethical challenges. - Referral to a professional: recommending that the patient seek assistance from
another professional (see Chap. 6 on referrals). - Informing/educating health professionals: addressing situations where other pro-
fessionals have made errors, for example, erroneously ordering or interpreting
test results or, more generally, providing health professional education. - Defer to preestablished rules or guidelines: following health-care facility poli-
cies, professional guidelines [e.g., from NSGC or the American Society of
Human Genetics (ASHG)], and consent policies. - Advocate for the patient: appealing to third parties to get medical care, genetic
testing, or reimbursement. - Withholding information: this strategy usually relates to situations involving
requests for information from third parties. The counselor refrains from disclos-
ing information, believing that it would be detrimental to the patient. - Disregarding personal beliefs and biases: promote patient autonomy by refrain-
ing from expressing one’s disagreement with the patient’s decision. - Determine boundaries within a family: when facing conflicting duties to family
members, clarifying to whom one’s professional obligation lies, with whom
information should be shared, and which family member is responsible for
decisions.
Groepper et al. ( 2015 ) found that laboratory genetic counselors use strategies
similar to those found by Bower et al. ( 2002 ). Laboratory genetic counselors’ strate-
gies were characterized by communication and education (with providers and
patients), consultation, adherence to professional guidelines and policies, and
patient advocacy. Balcom et al. ( 2016 ) suggest a series of steps for managing ethical
and professional challenges in the laboratory setting; we view these steps as equally
appropriate in a clinical setting: - Gathering the facts
- Identifying the parties involved and their responsibilities
- Defining the problem
- Determining course(s) of action
- Weighing potential ethical benefits and risks (especially ethics of care, justice,
and beneficence/nonmaleficence)
It is important to learn about the available resources within the facility in which
you practice (both as a student and later as a professional genetic counselor). These
include peer resources, supervisory resources, legal resources, ethical resources,
13.3 Guiding Ethical Principles for Health Professionals