Non-disclosure preimplantation genetic diagnosis for Huntington's disease: practical and ethical dilemmas.

Abstract

Prenatal diagnosis of Huntington's Disease (HD) is controversial. Selective abortion is considered unacceptable by some, since, being a late-onset disorder, any child born carrying the HD mutation might still expect many years of disease-free life. The test result itself has implications for the parents and other members of the family who may have decided not to be tested but who know that they may be at risk because a family member is affected. For this reason some potential carriers do not want to know their carrier status and may prefer prenatal exclusion testing. However, since half the fetuses carrying the affected grandparental allele may be normal, aborting these fetuses is also controversial. Preimplantation genetic diagnosis (PGD) has been suggested as an alternative by which asymptomatic individuals who are at high risk of carrying HD can avail themselves of antenatal genetic testing without incurring the emotional, social and financial burdens that might result from the presymptomatic disclosure of their own carrier status. However, non-disclosure testing of embryos in vitro presents specific practical difficulties. Assurance of absolute secrecy is difficult in the large team required for in vitro fertilization biopsy and diagnosis, and changes in practice which may be required to maintain the deception may be unethical.