title: An analysis of US fertility centre educational materials suggests that informed consent for preimplantation genetic diagnosis may be inadequate.
abstract: The use of preimplantation genetic diagnosis (PGD) has expanded both in number and scope over the past 2 decades. Initially carried out to avoid the birth of children with severe genetic disease, PGD is now used for a variety of medical and non-medical purposes. While some human studies have concluded that PGD is safe, animal studies and a recent human study suggest that the embryo biopsy procedure may result in neurological problems for the offspring. Given that the long-term safety of PGD has not been clearly established in humans, this study sought to determine how PGD safety is presented to prospective patients by means of a detailed website analysis. The websites of 262 US fertility centres performing PGD were analysed and comments about safety and risk were catalogued. Results of the analysis demonstrated that 78.2% of centre websites did not mention safety or risk of PGD at all. Of the 21.8% of centres that did contain safety or risk information about PGD, 28.1% included statements highlighting the potential risks, 38.6% presented information touting the procedure as safe and 33.3% included statements highlighting potential risks and the overall safety of the procedure. Thus, 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. This lack of disclosure suggests that informed consent is inadequate; this study examines numerous factors that are likely to inhibit comprehensive discussions of safety.
authors.affiliation: Department of Biological Sciences, Wellesley College, Wellesley, MA 02481, USA. mlabonte@wellesley.edu
authors.forename: Michelle Lynne
authors.initials: ML
authors.lastname: LaBonte
mesh_terms: D000554:Ambulatory Care Facilities; D005260:Female; D005298:Fertility; D006801:Humans; D007258:Informed Consent / Q000592:standards*; D010353:Patient Education as Topic / Q000379:methods; D011247:Pregnancy; D019836:Preimplantation Diagnosis / Q000009:adverse effects / Q000941:ethics / Q000379:methods; D013664:Teaching Materials / Q000592:standards*; D014481:United States