In this editorial by Lee Cooper published in today’s issue of Wired Magazine, a patient with Long QT Syndrome makes the case for the use of pre-implantation genetic diagnosis (PGD) used in tandem with in vitro fertilization (IVF) as a means to eliminate hereditary disease.
This technique has already been used in HCM; most successfully in cases caused by a single, identifiable genetic mutation. PGD combined with IVF is a potentially viable option for patients with HCM who are planning to grow their families.
Of course, there are many ethical issues raised with the use of this technology, and the use (or non-use) of these technologies is a very personal decision. Perhaps such moral uncertainty is what caused Cooper’s doctors to be “reticent to discuss IVF head on” and “bashful about the idea of removing [t]his disease from [his] lineage.”
As Cooper says in the editorial “…we can, and we must be able to speak clearly about the best ways to prevent disease if we are serious about eliminating it.” If every option were to be laid out on the table for consideration by the patient, then s/he would have the freedom to make a final decision in accordance with his/her own unique set of values.
What do you think?
HCM Beat 