Psychiatry and genetics : psychosocial, ethical, and legal considerations / edited by Michael A. Sperber, Lissy F. Jarvik.

Date:
[1976], ©1976
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Licence: Attribution-NonCommercial 4.0 International (CC BY-NC 4.0)

Credit: Psychiatry and genetics : psychosocial, ethical, and legal considerations / edited by Michael A. Sperber, Lissy F. Jarvik. Source: Wellcome Collection.

    140/224 (page 123)
    Psychology and Metacomrnunication in Genetic Counseling 123 A complex issue is that of confidentiality.* In particular, mass ge¬ netic screening may lead to leakage of confidential data, owing to the loss of strict privacy inherent in more closely circumscribed doctor-pa¬ tient relations. What should the counselor do when he learns that a member of his client's family may be at risk? Should the marriage partner or a relative be informed that an individual has Huntington chorea? Who should be told, and when, if a neonate is found to have an XYY chromosome complement? Gardner notes: Inappropriate discus¬ sions by counselors with parents may interfere with [the infant's] nor¬ mal gender role development . . . and may, indeed, produce patholog¬ ical changes in [him]. The counselor must be aware that he uses himself as a therapeutic instrument in terms of his relationship with parents and infants. ^ Transmitting certain genetic information may well create great stress in families.! For example, in studies of hemophiliacs, Agle ® notes ma¬ ternal guilt and overprotection, as well as overinvolvement of family resources, often to the detriment of other family activities. When one partner is involved in transmitting a genetic defect, the genetic counselor must decide whether or not to impart this information. In the opinion of Stevenson et al.,® it seems wise, unless it is obvious to patients or necessary for some reason, not to indicate that a condition was inherited through one or the other parent, as this can be a source of marital friction. (This view might be considered infantilizing by oth¬ ers.) Carter's data show that disclosing carrier status causes changes in a couple's reproductive plans, as well as a change of partners in some in¬ stances. In Leonard's study of 61 couples with genetic problems (cys¬ tic fibrosis, phenylketonuria, Down syndrome), 23 (about 38 percent) reported that genetic counseling had had an adverse effect on their sex lives.® Birenbaum notes that parents of the mentally retarded are in an am¬ biguous position: although their reproductive capacity shows no evi- * See also Chapter 10, pp. 241-242. t Sorenson's essays provide scholarly research and good references. See J. R. Soren- &on\Social Aspects of Applied Human Genetics. Russell Sage Foundation, 1971. See also Genetic Counseling: Some Psychological Considerations. Paper read at AAAS, Wash¬ ington, D.C., December 29, 1972. Certain points raised in this section derive from Soren¬ son's discussions.