Are IVF clinics hiding the risks of PGD from parents?

By  Michael Cook

Editor’s note. This appeared at www.bioedge.org/index.php/bioethics/bioethics_article/10017 and is reprinted with permission.

American couples who have pre-implantation genetic diagnosis (PGD) done on their embryos are almost never informed of the potential risks of the procedure, a Wellesley College biologist claims in the Journal of Medical Ethics [http://jme.bmj.com/content/early/2012/04/05/medethics-2011-100154.abstract]. Without this vital information, says Michelle LaBonte, parents are not capable of giving informed consent.

PGD, or embryo screening, has become a standard service in IVF clinics. A technician removes a cell from an 8-cell embryo and tests it for defects. If it passes, it is implanted in the womb.  

In a potentially explosive article, Dr. LaBonte asserts that “In efforts to eliminate risk through the use of PGD, we may in fact be creating a new set of risks perhaps even more concerning than those we are trying to avoid.” She bases her claims on a survey of the websites of the 262 US clinics offering PGD. She found that “86.6% of PGD-performing centres state that PGD is safe and/or fail to disclose any risks on their websites despite the fact that the impact of the procedure on the long-term health of offspring is unproven”.

IVF clinics have adopted the PGD technology for a wide range of uses — from eliminating ‘defective’ embryos to testing for genetic defects to sex selection — without a thorough understanding of the risks involved. She cites an IVF specialist who admitted ruefully that “[T]he babies that have resulted aren’t of reproductive age yet, and we don’t know what sort of effects this technique has on the adult human… And I think that I consider it still experimental taking a cell from an embryo.”

She points out that this has happened before. For years amniocentesis was touted as completely safe until studies showed that there was an increased risk of spontaneous abortion.

Dr LaBonte speculates about why the risks of PGD are being ignored. She gives six reasons:

* Parents were so concerned about the genetic disease of a first child that they overlooked the risks of PGD for a second child.

* Doctors allayed the misgivings of parents.   

* Parental choice trumps the dangers to the embryo: “Unlike ‘passive smokers,’ potential biopsied embryos are not in a position to seek regulation of this procedure.” 

* Debate over the ethics of using PGD to create “designer babies” has distracted parents’ attention from its safety. 

* There have been no widely-publicised catastrophic failures yet.

* “The financial rewards of PGD represent a conflict of interest for providers.”

Dr. LaBonte concludes IVF clinics must inform their clients that PGD is still an unproven technology.

“prospective parents of PGD babies should be made aware of all safety information, including that of human and animal studies, and be informed that long-term, definitive safety studies have not yet been carried out. Anything less should not be considered ‘informed’ consent.”