Information and Access to Prenatal Genetic Testing Versus the Conscience Clause and the Therapeutic Privilege

Abstract

Prenatal genetic testing is at present the most reliable source of information on the state of health of a fetus. The right to have the prenatal diagnosis is based on Article. 2a of the Law on Family Planning…, which explicitly grants free access to information and prenatal testing. This right is only a particular case of the broader right to information on one’s health, which also includes information on the state of health of a fetus. As long as the fetus remains inside the womb, the woman is the only person entitled to request or consent to the test, and to obtain its results. Information itself is always morally neutral, so the right to obtain it cannot be lawfully limited through the use of the conscience clause. Getting information is a necessary condition for an informed decision to undergo the testing, and giving information is an element of the duty of care. The lack of adequate information precludes the patient’s autonomous decision and thus violates her fundamental right. Misleading the patient is blameworthy behavior, ethically wrong and contrary to the physician’s duty of care. The argument that “the patient should not know too much” is based on anachronic, “hard paternalistic” argumentation, and is contrary to the law which requires providing the patient with full information and which leaves no place for the limitation of the patient’s knowledge. The patient’s right to information prevails over the conscience clause. The only exceptions to this right are the patient’s voluntary explicit renunciation of information or appointing a substitute person authorized to hear the bad prognosis. For the last reason, effective concealment of the results of a prenatal test cannot be based on the so-called therapeutic privilege.