Genetic counseling: making room for beneficence

JR Botkin - The Journal of Clinical Ethics, 1995 - journals.uchicago.edu
The Journal of Clinical Ethics, 1995journals.uchicago.edu
Respect for individual autonomy is a strong tradition in genetic counseling. The profession
arose in conjunction with prenatal diagnostic technology and the need to provide
information and counseling to couples about reproductive choices. These choices are so
highly value laden that non-directiveness is essential to allow couples to identify and follow
their own values in this personal aspect of their lives. However, as the capabilities in human
genetics expand, counselors are being challenged with new roles and it is not clear whether …
Respect for individual autonomy is a strong tradition in genetic counseling. The profession arose in conjunction with prenatal diagnostic technology and the need to provide information and counseling to couples about reproductive choices. These choices are so highly value laden that non-directiveness is essential to allow couples to identify and follow their own values in this personal aspect of their lives. However, as the capabilities in human genetics expand, counselors are being challenged with new roles and it is not clear whether a narrow allegiance to autonomy as a guiding principle will best serve those seeking genetic services. Parker and Majeske’s case analysis illustrates the tension between the traditional respect for autonomy and the temptation to manage information based on what the counselor believes is best for his or her clients. Parker and Majeske develop a good response to the dilemma posed. They also advocate preventive ethics in the form of policies for counseling services that encourage anticipatory discussions of potentially problematic issues with clients. When certain kinds of problems can be predicted, discussions in advance about how to manage information are ideal. However, the authors’ justification for the resolution of this unanticipated dilemma strains to avoid considerations of beneficence and, I think, fails on this basis. They argue that Jean, who is counseling Felicia and Jeff, should not disclose Jeff’s IQ information because it is not her right to do so. Parker and Majeske emphasize that the couple’s best interest is not considered in this resolution, and they imply that to consider the couple’s best interest would be paternalistic. They note that what the couple requested was an assessment of their risk of bearing a child with mental retardation or a learning disability, and thus the counselor has an obligation to provide this information, but no right to disclose other information that was not explicitly sought.
The distinction between information that was explicitly sought and other “incidental” information that surfaces is, of course, quite important. If the counselor were to attempt to hide or misrepresent information about the couple’s risk, based on what the counselor thought was in their best interest, then such conduct would be paternalistic and almost certainly unjustified. But as information becomes more peripheral from the central request of the couple, then the principle of autonomy, alone, seems to be an inflexible tool for helping the counselor to decide what to do. We seem to be forced either to respect the couple’s autonomy by revealing all information that might conceivably be relevant or to respect their autonomy by revealing only the information specifically requested. A more flexible approach, which is quite consistent with the tradition of medicine more generally, is for the counselor to decide what incidental information should be discussed based on what the counselor believes would be most helpful to the couple. The flexibility of this approach is illustrated by changing a key element in the case. Imagine that Jean discovered in the records that Jeff’s IQ had been measured at 105, instead of 65. Would she then struggle with
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