365this situation, beneficence (acting in a patient’s best interest) is challenged by duty
to respect patient autonomy. We act paternalistically or parentally when we assume
we are in a better position than the patient’s family to determine what is in their best
interest. The NSGC Code of Ethics challenges paternalism by advocating respect
for patient autonomy so that patients can act in accordance with their own values,
even when you might disagree with their decisions. In the case above, you may want
to first ensure the patient understands the risks and benefits of both testing and not
testing. If you find the patient is making an informed, autonomous choice, your
primary obligation would be to respect her or his decision.
13.3.4 Justice/Fairness
Justice is a principle that concerns the equitable distribution of burdens and benefits
of health care. Justice includes preventing discrimination with respect to access to
services. The NSGC Code of Ethics (Appendix B) addresses nondiscrimination by
saying that counselors “provide genetic counseling services to their clients regard-
less of their clients’ abilities, age, culture, religion, ethnicity, language, sexual ori-
entation and gender identity.” In terms of counselors and societal obligations, the
Code of Ethics encourages counselors to “promote policies that aim to prevent
genetic discrimination and oppose the use of genetic information as a basis for
discrimination.”
Many questions remain unresolved with respect to the types of genetic services
that ought to be offered, what will be paid for, and how to balance cost with efficacy.
For instance, you may consider, as other counselors sometimes do, whether you
would offer a genetic test that insurance does not cover and the patient could not
afford. Most counselors would tell people about all options. You may find that you
need to help the patient seek funding and/or advocate for financial coverage of
options they cannot afford.
Acting justly also means equitably serving all who seek services. Throughout
this book we have highlighted cultural considerations in providing genetic counsel-
ing. “Increasing the cultural competence of genetic counselors may help ameliorate
some ethnic/racial disparities experienced during genetic counseling clinical
encounters. Culturally competent counselors may also be able to effect change in
the clinic and in society at large; cultural competence may help in making policy
choices that promote the health and well-being of persons affected by ethnic and
racial disparities in genetic health care” (Lewis 2010 , p. 202).
13.3.5 Fidelity and Veracity
Fidelity and veracity are principles that support patient autonomy. Fidelity, or faith-
fulness, includes promise-keeping, meeting contracts, and being trustworthy.
Section II of the NSGC Code of Ethics encourages genetic counselors to “Clarify
13.3 Guiding Ethical Principles for Health Professionals