genetic counselor

In considering the possible courses of action open to a genetic counselor in specific cases, we must first establish the goals of genetic counseling and the acceptable means to reach these goals. The standard view is that the genetic counselor must not impose upon patient autonomy, that is, the ability of the client to make her own decisions, and that to do this he must not express his personal moral opinion to his client. According to Robert Wachbroit and David Wasserman in the article “Clarifying the Goals of Nondirective Genetic Counseling” however, the genetic counselor needs not maintain value neutrality, if he is careful to remind clients that his ethical opinion holds no more merit than theirs because such decisions are based less on science than on moral judgements, which client and counselor are equally qualified to make. Wachbroit and Wasserman hold that to give information is not enough, that clients cannot independently see every possibility without guidance. At the other extreme, Lisa Blumberg, writing for The Disability Rag & Resource, believes that the very existence of genetic testing for “abnormalities” and the opportunity to abort a fetus with such traits encourages abortion as a type of discrimination against people with disabilities.

In ideal cases, it seems the best way to find a balance between these opinions is to define limits to the genetic counselor’s authority, within which the counselor can move freely, and to provide guidelines for genetic counselors to follow to achieve the goal of independent but informed client decision-making. The genetic counselor’s responsibility begins prior to testing: before the specifics of a client’s situation become the focus of discussion, the genetic counselor should make clear his role as 1) a provider of comprehensible information and 2) a peer guide through the decision-making process. The client must understand that although she is consulting the genetic counselor, she is not committed to aborting should tests reveal abnormalities generally considered defects. She must also understand that, no matter what her conclusions, she will have access to the same resources and support systems. If tests are performed, the genetic counselor’s next responsibility is to offer the client all available information regarding the results, including (but not limited to) presentation ranges of detected conditions, options available to the client, and reports of the results, both descriptive and testimonial, of all these courses of action. What is essential here is equal representation of all viewpoints regardless of the genetic counselor’s personal opinion. With this equality, the client is able to consider the options without the sense that she is being urged to choose any one more than another. If asked his own opinion, the genetic counselor may offer it, but only with the caveat that it is the opinion of one no more (perhaps even less) qualified to make this choice than the client herself. Finally, the genetic counselor must support the client, whatever her choice. The genetic counselor cannot deny his client’s right to choose even if her choice is contrary to his opinion, and, once he has asked for her decision, he must not attempt to persuade her of the greater merit of any of the options.

I have analyzed two cases:
The first involves a couple whose fetus has been tested with Duchene Muscular Dystrophy and who wish to bring it to term. They do not have the financial resources to provide for all of this child's future medical expenses. They believe that a cure will be developed for this child before he or she has grown up. The other involves Mrs. Roller, whose sister has Down's Syndrome and who is afraid thar her fetus also does; she wishes to have the fetus aborted without her telling her husband that she is pregnant, and she does not want to have it tested first because she is afraid of the risks involved to her. She then wants to be sterilized.

In these cases, unfortunately, it is too late to take the cautionary steps before the clients make their decisions. Still, their opinions and statements indicate that they are misinformed or not adequately informed about the situation. In such cases, the genetic counselor may offer more information, and may even express his opinion, but it, too, must come with the reminder that the genetic counselor’s opinion has no more authority resulting from his position than anyone else. Indeed, the genetic counselor should continue to present all options equally; he should not put any forward out of a desire to change his client’s mind. Rather, he should do so if evidence shows that the client is not sufficiently informed or has not yet received all available information. He may present new information to his client only in the same manner in which he would have presented it before learning of his client’s decision.

For example, if the genetic counselor feels that the parents of the fetus with Muscular Dystrophy do not express realistic expectations of the results of their decision to bring their fetus to term, he may provide them with accounts of the results of prior, similar decisions. He may introduce the couple to parents of children with DMD, especially those under similar financial constraints. He may inform them of public and private insurance company policy regarding medical therapy for DMD and of the opinions of medical professionals regarding developing effective treatment for the condition within the fetus’ predicted lifetime. He may not confront his clients solely with his personal opinions and attempt to change their minds based on these opinions; his enthusiasm or distaste for this course of action must not be displayed so the clients do not feel that they are being judged. The genetic counselor must remember that, ultimately, the choice rests with the client, and, no matter what this choice is, the genetic counselor is committed to giving her his support and expertise as a professional.

Similarly, the genetic counselor for Mrs. Roller, who wishes to have her fetus aborted because her sister has Down’s Syndrome, and she is afraid her fetus might have it as well because of this pedigree, may provide her with information regarding the causes and probabilities of the fetus’ having the condition if he believes her to be misinformed, but he must not attempt to “sell” the possibility of keeping the child whether it has Down’s Syndrome or not, of taking her chances that it will not, or of accepting the risks of amniocentesis or chorionic villus sampling to find out. He must allow her the freedom as an adult capable of moral choices the right to have her fetus aborted and to be sterilized in confidence despite any reservations he might have about her motivation or her refusal to inform her husband. To do so would be to violate respect for client autonomy because he would be going beyond presenting options and information to implying that his opinion has greater merit than hers.

No one’s opinion on such matters has greater value than anyone else’s, even when this opinion is the opinion of the majority. We may express and debate our viewpoints, but we must not promote our opinions over another’s by force, whether this force takes the form of superior physical strength or societal authority and pressure. It is true that in cases involving fetuses and children, the issue of protecting the rights of third parties not to be harmed by the decisions of others brings to light the question of whether parents should be allowed to so drastically affect the lives of their offspring until they are of age. However, it is not the place of the genetic counselor to answer this question in each individual case, and he must be impartial to the issue, for the parent who goes to a genetic counselor assumes the right to make this critical choice. Instead, the genetic counselor must present information and viewpoints, not represent any one way of thinking. In this manner, the genetic counselor can advise and _counsel_ his clients, even telling the clients what seems to him the best alternative, but serving the critical function of educating the decision-makers, without influencing the actual decisions and slipping down the slope from expression of opinion to influence to coercion.

cited:
Robert Wachbroit and David Wasserman, “Clarifying the Goals of Nondirective Genetic Counseling”.
Lisa Blumberg, The Disability Rag & Resource.