Preimplantation genetic diagnosis on in vitro fertilization clinic websites: presentations of risks, benefits and other information
Received 29 October 2007; received in revised form 30 July 2008; accepted 30 July 2008. published online 01 October 2008.
Objective
To examine information on preimplantation genetic diagnosis (PGD) presented on IVF clinic websites.
Design
We systematically sampled every third IVF clinic on the 2004 Centers for Disease Control provider list.
Setting
The Internet.
Patient(s)
None.
Intervention(s)
None.
Main Outcome Measure(s)
Benefits, risks, and other types of information mentioned regarding PGD.
Result(s)
Of 135 sites examined, 88.1% had websites, and 70% mentioned PGD, of which 27% were university- or hospital-based and 63% were private clinics. Sites mentioning PGD listed uses and benefits of PGD far more than the risks involved. Of these sites, 76% described testing for single-gene diseases, but fewer mentioned risks of missing target diagnoses (35%) or risks for loss of embryo (18%), and 14% described PGD as new or controversial. Private clinics were more likely than other programs to be on either the East or West Coast, list certain PGD risks (e.g., diagnostic error), note that PGD was new or controversial, reference source of PGD information, provide accuracy rates of genetic testing of embryos, and offer gender selection for social reasons.
Conclusion(s)
Most IVF clinics advertise PGD online, but the scope and quality of information about it varies widely, emphasizing benefits while minimizing risks. Clinics and patients may benefit from more thorough and consistent presentation of PGD, drawing on available evidence to best provide a realistic portrayal of PGD.
aCollege of Physicians and Surgeons and Mailman School of Public Health, Columbia University, New York, New York
bColumbia University Medical Center, Columbia University, New York, New York
cCollege of Physicians and Surgeons, Columbia University, New York, New York
Reprint requests: Robert Klitzman, M.D., HIV Center, Unit 15, 1051 Riverside Drive, New York, NY 10032 (FAX: 212-543-6003).
R.K. has nothing to disclose. B.Z. has nothing to disclose. W.F. has nothing to disclose. M.V.S. has nothing to disclose. W.C. has nothing to disclose. P.A. has nothing to disclose.
Supported by the National Human Genome Research Institute (R01 HG004214) and the National Center for Research Resources (UL1 RR024156).
ABSTRACT