1. Survey report of gamete donors' and recipients' preferences regarding disclosure of third party reproduction outcomes and genetic risk information
- Author
-
Steven R, Lindheim, Natalie, Porat, and Ami S, Jaeger
- Subjects
Adult ,Male ,Informed Consent ,Oocyte Donation ,Reproductive Rights ,Pregnancy Outcome ,Disclosure ,Tissue Donors ,Young Adult ,Treatment Outcome ,Pregnancy ,Humans ,Insemination, Artificial, Heterologous ,Female ,Genetic Privacy ,Attitude to Health ,Confidentiality - Abstract
Issues surrounding egg donation informed consent have recently been spotlighted due to advances in medical genetics. We sought information on attitudes and desires of donors and recipients to craft a program policy on counseling, disclosures, and re-contacting participants.Between April 2003 and September 2006 we conducted a questionnaire-based evaluation in our oocyte donor program. Donors pre-donation (n=265) and those undergoing the process (n=60), and recipients either ante- or postpartum (n=57), were asked about their desire to know/disclose obstetric outcomes (Question 1); willingness for contact in the event of a medical emergency (Question 2); and wish to know/disclose a liveborn's medical condition (Question 3).Pre-donation questioning among all donors generally revealed reticence to Question 1 (31% [n=83]), but were overall amenable with Questions 2 and 3 (83% [n=220] and 83% [n=219]). Following the donation process, no differences in Questions 1 and 2 were noted, but fewer donors were amenable with Question 3 (pre-donation 93% [n=56] versus post-donation 38% [n=23]; P0.01). Overall, recipients were amenable to all three questions (88% [n=50], 74% [n=42] and 88% [n=50]), with similar responses both ante- and postpartum.All programs participating in gamete donation should establish a comprehensive disclosure policy, including consents that are built upon effective lines of communication between clinical staff and legal counsel assuring that parentage, relinquishment, and re-contact information in donor-recipient agreements are consistent with clinic consent documents and desires of both parties; All decisions must be adequately documented and honored and long-term counseling needs should be addressed.
- Published
- 2011