Ethical conflict between reproductive rights and offspring rights of patients with genetic disease： an ethical analysis of an ectodermal dysplasia case asking for assisted reproductive technology to assist in pregnancy / 中国医学伦理学

ABSTRACT

With the continuous progress of human assisted reproductive technology （ART）， more genetic diseases have been discovered and the use of innovative technologies is intended to reduce genetic risks， and the reproductive rights of infertile couples have been protected and satisfied to a greater extent. However， in some special genetic cases， offspring rights need to be fully considered. This paper conducted an ethical analysis of an “ectodermal dysplasia” case asking for the implementation of human ART to assist in pregnancy， revealing the ethical dilemmas in the implementation of ART for patients with genetic diseases， which were caused by the contradiction between the protection of the patient’s reproductive rights and the offspring rights， as well as the contradiction between the implementation of ART and the blocking of genetic risk. According to the literature review， it is proposed that in the diagnosis， treatment， and ethical judgment process of genetic cases， informed consent should be fully fulfilled. Based on the ethical foundation of care， narrative medicine methods should be used to form doctor-patient joint decision-making， avoiding paternalism. Meanwhile， sufficient information support should be provided and the ethical supervision mechanism should be improved to effectively solve the ethical dilemmas.