Robert Klitzman1, Beata Zolovska2, William Folberth2, Mark V Sauer3, Wendy Chung3, Paul Appelbaum3. 1. College of Physicians and Surgeons and Mailman School of Public Health, Columbia University, New York, New York. Electronic address: rlk2@columbia.edu. 2. Columbia University Medical Center, Columbia University, New York, New York. 3. College of Physicians and Surgeons, Columbia University, New York, New York.
Abstract
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.
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.
Authors: M A Winker; A Flanagin; B Chi-Lum; J White; K Andrews; R L Kennett; C D DeAngelis; R A Musacchio Journal: JAMA Date: 2000 Mar 22-29 Impact factor: 56.272
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