Ethical issues in ocular genetics

Abstract

Purpose of review: To review some of the major issues in ophthalmic genetics ethics: predictive testing, prenatal testing and abortion, gene therapy, confidentiality, payment for genetic testing, the duty to recontact patients and convey new information.

Recent findings: Patients and families may perceive benefits even though genetic testing may be associated with adverse psychosocial outcomes. Most patients were in favor of prenatal diagnosis but opposed abortion. Patient selection as candidates for gene therapy should be based on the different clinical characteristics of each hereditary disease. The balance between the right of the patient for confidentiality and the best interest of family members or society is an ethical challenge. Most insurance companies will pay for genetic testing if the condition is hereditary. The duty to recontact patients when new medical information becomes available is still ethically controversial.

Summary: The field of ocular genetics is ever growing involving complex medical, technical, financial and social issues. As a result, ethical issues are expected to become more common. Properly prepared medical professionals as well as unique counseling for participants and families may enable improved decision-making taking into consideration the needs of each individual.