Letter to the Editor

Informing Parents About the Carrier Status ofTheir Fetus

To the Editor:

Professor ten Kate [1996] is reluctant to provide in-formation on the carrier status for an autosomal reces-sive disease or a balanced chromosomal translocationresulting from prenatal diagnosis in a pregnancy atrisk either for CF or an unbalanced, inherited chromo-somal rearrangement.

It seems true that the autonomy of the future childmight be affected by the parents’ knowledge on thegenetic status of their otherwise healthy unborn fetus.On the other hand, these parents knew their prior risk,had been tested for their own carrier status and de-cided to have a prenatal diagnosis to prevent the birthof affected offspring. They will know that testing willgive the answer about carrier status (in case of an un-affected pregnancy). Most of the parents in our prena-tal diagnosis program have, since 1970, never com-plained of being informed, nor have children known tobe carriers complained.

There seems no place for genetic counselers’ pater-nalism in withholding available information on an un-born child to its parents, especially when it will enable

parents to deal with the genetic problem in their familyin a responsible manner. It may help their children tobecome informed at a reasonable period in their life.What parents ask is, ‘‘Help us to prepare our children.’’What they usually don’t understand is the geneticistsaying ‘‘You have no right to know about the carrierstatus of your unborn/newborn child.’’

Moreover, what guarantees can the average clinicalgenetic service offer to keep track of a population withits modern mobility?

REFERENCES

ten Kate LP (1996): Should parents be informed about the carrier status oftheir fetus? Am J Med Genet 65:89.

Martinus F. Niermeijer*Frans J. LosDepartment of Clinical GeneticsUniversity Hospital DijkzigtErasmus UniversityRotterdam, The Netherlands

*Correspondence to: Dr. Martinus F. Niermeijer, Departmentof Clinical Genetics, Erasmus University, Rotterdam, The Neth-erlands.

Received 30 December 1996; Accepted 22 April 1997

American Journal of Medical Genetics 73:489 (1997)

© 1997 Wiley-Liss, Inc.