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ing during a pregnancy caused a child to have Down syndrome. Klitzman
( 2010 ) found individuals who were at risk for or had Huntington disease,
breast cancer, or alpha-1 antitrypsin deficiency had “Misunderstandings
about statistics and genetics [that] often fueled each other, and reflected
denial, and desires for hope and control...emotional needs can thus outweigh
understandings of genetics and statistics, and providers’ input. [Furthermore,]
individuals often maintained non- scientific beliefs, though embarrassed by
these...” (p. 430).General Guidelines for Presenting Risk Information
- First and foremost, remember that genetic counseling is a communication pro-
cess. Thus, risk communication is a conversation with a patient, not a lecture. - Assess patient risk perceptions. Ask them a question like: “Is this what you were
expecting to hear? How does this sound to you – high/low? What is your reaction
to hearing this information?” Listen to how patients frame the information you
give them “...whether they talk about the ‘chance of developing cancer’ or the
‘chance of not developing cancer’ as clues to how they perceive their risk”
(O’Doherty and Suthers 2007 ). - Present risk information in an unbiased way. Present both sides of a risk (i.e.,
use positive and negative framing), “There is a 1% chance of ____ occurring,
and there is a 99% chance of it not occurring.” Terms such as, “the risk is
only...” and “as high as...” suggest your own views of risk information; you
should present risk information in a few different ways in order to present it
more neutrally (Simonoff 1998 ). When using qualitative descriptors such as
likely or unlikely, it is important to also provide numeric information as “peo-
ple perceive the word likely to imply probabilities anywhere between .5 and
.99...” (Austin 2010 , p. 231). Point out that an “increased risk” is not always
the same as a high risk. Be mindful that certain words may convey a stigma or
negative connotation for some patients (Melas et al. 2012 ; O’Doherty and
Suthers 2007 , p. 416). - Be flexible in your approach. You will probably have personal preferences for the
way in which you present risk information. Indeed, Hallowell et al. ( 1997 ) found
this to be the case for their sample of experienced genetic counselors. Just
remember that you may need to supplement your personal preference with
another way in order to accommodate patient preferences, abilities, situations,
etc. In other words, you need to be flexible in how you communicate risk
information. - Remind yourself that your patient’s perceptions of risk may be quite different
from yours (Bottorff et al. 1998 ; Hallowell et al. 1997 ) and that many patients
interpret risk as binary or categorical (e.g., either I have the gene or I don’t have
it) no matter how you present the data (Austin 2010 ).
7 Providing Information and Facilitating Patient Decision-Making