Views and practices about record keeping and dissemination in donor conception

Abstract

Objective: To examine views and practices of American Society for Reproductive Medicine (ASRM) members about record keeping in donor conceptions. Design: Opinions were identified through questionnaires mailed to three ASRM professional groups: Mental Health Professional Group, Nurses Professional Group, and the Society for Reproductive Endocrinology and Infertility. Materials/Methods: Data were collected from anonymous, four-page questionnaires that contained 29 questions distributed across demographics, current practice, and opinions sections. Results: Seventy-one participants completed questionnaires. Half the sample comprised nurses, 29% mental health professionals, and 17% physicians. Approximately two thirds of participants had over 10 years of experience in the field. All surveyed participated in egg and/or sperm donation, but only 28% of the participants provided embryo donation. The majority of egg donor programs (59%) used their own program-recruited donors; all programs that provided donor insemination used commercial sperm banks. Most consent forms for donors did not address the duration records are kept, their location, or access to them by offspring. Most programs planned to keep records permanently, had long-term storage plans for charts, and planned to track their egg and embryo donor offspring (fewer plan to track sperm donor offspring). Information recorded about donors by most programs included both medical/genetic and personal/psychosocial information. With regard to law and policy, 66% of participants felt that the ASRM should determine policy with regard to information collection and release, and, of these 66%, two-thirds felt that it should be the ASRM alone and not a governmental body or special commission that did so; 99% felt the ASRM should issue more specific guidelines on information collected and released about donors. 69% felt medical and 36% felt non-medical information about donors and births should be forwarded to a registry with anonymity for the donor safeguarded. The chief concerns about a donor registry were: cost (67%), loss of donors (48%), loss of privacy for donors and recipients (73%), and no need for a registry (13%). Benefits were: tracking genetic and medical information (82%), research data for follow-up (64%), preservation of information if a program closes (82%), protection from lawsuits (52%), and a guarantee that offspring could obtain information about the donor (55%). 97% felt that medical and genetic information on donors should be updated. Conclusions: Most participants endorsed the need for record keeping with donor gametes. There was consensus about what information programs record and give recipients about donors. Participants identified benefits and drawbacks of a donor registry and expressed support for the preservation of information for offspring and follow-up of donor medical histories. Government setting policies was opposed.