366
and define their professional role(s) and relationships with clients, disclose any real
or perceived conflict of interest, and provide an accurate description of their ser-
vices” (Appendix B).
The obligation to be faithful presumes that professionals have a duty to care for
their patients. Patients generally assume their interests are a primary concern of the
counselor’s, and professionals generally focus solely on patients’ best interests.
Genetic counselors may encounter challenges to honoring a patient’s wishes when
they reflect on the impact genetic information could have on other family members
(McCarthy Veach et al. 2001 ; Hodgson and Gaff 2013 ).
Fidelity also challenges counselors to watch what they promise and to let people
know the limits and consequences of the genetic information they will receive.
Concerning what you promise to patients, remember there are mandatory reporting
requirements related to illegal substance use, child and vulnerable adult abuse and
neglect, and threats of harm to self or others. Therefore, you should inform patients
that in such situations, maintaining confidentiality would not be possible. With
respect to consequences of genetic information, you will often give patients prenatal
and presymptomatic test information and will need to tell them what that informa-
tion might mean for future situations such as jobs and insurance.
Veracity, or truthfulness, concerns your duty to tell the truth, meaning you do not
lie to or deceive patients. Truth telling supports patient autonomy because patients
can only be empowered to make decisions when they receive accurate information.
Veracity is closely related to fidelity and to sharing accurate information in the
informed consent process.
13.3.6 Comments About Ethical Principles
Ethical principles can serve as guidelines for addressing ethical dilemmas. They
provide a language you can use to think about and discuss challenging situations
with colleagues. You will find, however, that an awareness of these principles
does not automatically provide the answer to ethical questions. In fact, ethical
dilemmas often consist of competing obligations, that is, a desire to do two
mutually incompatible things. In some situations, you will want to maintain an
individual’s confidentiality, but will also be concerned with harm to family
members if genetic information is not disclosed. For instance, you might see a
parent affected with familial adenomatous polyposis (FAP) who refuses to dis-
close that fact to his or her children. You may be concerned the child will not
have information about the importance of screening that could prevent the occur-
rence of this cancer. In instances such as this, you must weigh the relevant prin-
ciples, consult with other professionals, and choose the most important principle
as a basis for action. Increasingly, genetic technologies such as microarray test-
ing and whole exome sequencing raise ethical issues with regard to informed
consent and sharing of results (Blackburn et al. 2015 ; Lohn et al. 2014 ;
Richardson and Ormond 2017 ).