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Parental counseling

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Physicians/counselors have a duty to convey information about the known options, risks, benefits, and foreseeable consequences203205 to couples with increased risks of having children with genetic disorders. Such a duty may be difficult, if not impossible, to fulfill if only one member of the couple attends genetic counseling. The issues are usually complex and are frequently compounded by feelings of guilt and by ignorance, family prejudices, religious obstacles, fear, and serious differences of opinion between partners. Hence, when possible (at the time the appointment is made would seem to be best), the necessity that the couple attend together should be emphasized. Physicians/counselors have often seen an extremely anxious parent attend counseling alone and then have learned later of the counselee's incorrect interpretation to the partner, lack of appreciation of the true risk figures, and unnecessary emotional chaos. Not even letters written to couples after the counseling session333 (a recommended procedure, to summarize the essence of the counseling provided) can safely substitute for face‐to‐face discussions with both, allowing for questions and interchange about the issues and an opportunity to examine the partner.

Genetic counselors should be cognizant of the complex interactive factors involved in parental reproductive decision making. Frets334 confirmed the importance of the burden of the disease in question and found that the interpretation of risk (high or low) and the wish to have children were paramount factors. The absence of personal experience of the disease was also found to be a significant influence. Frets identified a number of factors that were independently and significantly associated with problems experienced by 43 percent of counseled couples. These included no postcounseling support, recognition of high risk, disapproval by relatives, having an affected child, and decisions not to have a (or another) child. Due diligence is necessary for the partners of genetic disease carriers, who clearly experience significant psychologic distress.335

Genetic Disorders and the Fetus

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