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Directive Language During Genetic Counseling for Fetal Abnormalities

In the medical field, most medical decisions are left for the patient or surrogate decision maker to determine out of concern for patient autonomy, and during pregnancy, decisions are left up to the parents. However, in critical conditions during pregnancy when the counsel of a medical professional is needed, how do medical professionals ensure that counseling allows the parents to make a fully informed decision? What information is presented to ensure that all options are made available to the parents? How do counselors give both neutral and personally relative information to the parents? As fetal genetic testing procedures become more sophisticated and routine, genetic counselors are meeting more and more with prospective parents either seeking information about undergoing genetic testing or seeking counseling about test results. During these appointments, genetic counselors and prospective parents may discuss whether or not to undergo testing, the results of genetic testing, or decide what actions to take based on the test results. Oftentimes, genetic counselors work with parents who have had their fetus screened for conditions such as Down Syndrome, trisomy 18, trisomy 13, and various sex chromosome abnormalities.

There are several types of genetic testing that are available to prospective parents. For patients undergoing in-vitro fertilization (IVF) or intracytoplasmic sperm injection (ICSI), parents may undergo preimplantation genetic diagnosis or screening (PGD/S) which allows the developed embryos to be tested for genetic abnormalities prior to implantation, thus avoiding the need to terminate a wanted pregnancy. Additionally, for women who are already pregnant, there are a myriad of tests for genetic conditions, ranging from noninvasive prenatal testing (NIPT) to amniocentesis, all of which test for aneuploidies and various genetic conditions. With the advancement in genetic testing technology, many of these diagnostic and screening procedures are becoming more and more accurate. Because of this, there is a stronger need for proper consultation prior to and following these procedures, as the results of these tests more precisely determine the success of the pregnancy and the health of the child.

Non-directive counseling should attempt to work alongside the patient’s needs and beliefs, provide objective facts about and outcomes of all options available, and above all, ensure that the physician remains as neutral as possible in the decision making process to ensure that the parents feel cared for and respected. However, while the primary goal of genetic counselors is to give non-directive advice, there are various phrases and subtleties within the use of language that may guide the parents in one direction or another. The use of emotionally charged or value laden language may A.) indirectly assert the physician’s personal opinion in the decision making process, and B.) subtly guide the parents toward a certain decision. This type of guided language may interfere with patient autonomy by suggesting that one decision is more favorable over another, taking away the parent’s ability to make a fully informed decision. Language that may seem non-directive may, in fact, lead patients to a specific decision through the use of certain phrases, words, the inclusion of options that are offered and discussed, and in some cases, the exclusion of information altogether. For example, the use of medical terms such as lethal, futile, incompatible with life , and even the use of the word baby as opposed to fetus all carry specific and oftentimes emotional connotations that may guide the parents in one way or another.

As human beings, communication with others is grounded in the ability to relate to others and converse with others in ways that produce meaningful relationships. In the medical field, this reality is no different. In times of medical crises or in difficult medical situations, the ways in which humans communicate and converse with one another is vitally important to outcomes and subsequent decisions regarding the situation. During genetic counseling, the counselor’s language should be as non-direct as possible out of respect for the patient’s individuality in regards to how they may respond to the situation. Out of respect for the autonomy of the parents, the decision making process should be both neutral and supportive so that the parents feel respected regardless of the decision that they make. Counselors have the ability to be both realistic and empathetic about the ways they advise the parents after a diagnosis of a genetic abnormality. By remaining neutral and realistic yet gentle and empathetic, physicians will be better equipped to help the parents feel both informed and supported, thus possibly relieving some of the stress from an unplanned complication.

Non-directive language is vitally important to an ethical counselor/counselee relationship as it allows the counselor to act as an impartial support system to the parents as they move through a difficult and unexpected situation, and it respects the autonomy of the counselees. After the diagnosis of a genetic abnormality, parents should feel as though they are not required to make a hasty or rushed decision. In order to provide clarity and autonomy to the patient, counselors should use non-directive language to ensure that the parents have full ownership in the decision making process. While the diagnosis of a genetic condition may be difficult, non-directive counseling helps to foster the most beneficial and ethical relationship between counselor and counselee, and it gives the parents autonomy while making a literal life or death decision.

Review: Sherwin B. Nuland Summer Institute in Bioethics

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