Interests, obligations, and rights in gamete and embryo donation: an Ethics Committee opinion Ethics Committee of the American Society for Reproductive Medicine American Society for Reproductive Medicine, Birmingham, Alabama This Ethics Committee report outlines the interests, obligations, and rights of all parties involved in gamete and embryo donation: both males and females who choose to provide gametes or embryos for use by others, recipients of donated gametes and embryos, individuals born as a result of gamete or embryo donation, and the programs that provide donated gametes and embryos to patients. This document replaces the document ‘‘Interests, obligations, and rights of the donor in gamete donation,’’ last published in 2014. (Fertil SterilÒ 2019;111:664–70. Ó2019 by American Society for Reproductive Medicine.) Earn online CME credit related to this document at www.asrm.org/elearn Discuss: You can discuss this article with its authors and other readers at https://www.fertstertdialog.com/users/16110-fertility- and-sterility/posts/42817-27610 KEY POINTS embryos once procured unless a since laws or individual circum- valid contract between the parties stances change and that there is a Programs should inform gamete do- provides otherwise. possibility they may be contacted nors and individuals donating em- Individuals should be informed that by offspring in the future. Similarly, bryos, as well as recipients of donor donating gametes or embryos does maintaining anonymity of parties gametes and donated embryos, about not give them legal rights or duties cannot be guaranteed since commer- potential legal, medical, and psycho- to rear any resulting children. Recip- cially available genetic testing social issues involved in their ients should be informed that upon and agencies that allow dissemina- donation. procurement of gametes or embryos, tion of identifying information Programs should inform donors and they assume legal rights and duties through social media increases the recipients that they may be screened over the gametes, embryos, and any risk of inadvertent disclosure of fi for speci c infectious diseases and resulting children produced from participants. other health-related risk factors, the donation. Programs should strongly encourage including genetic testing, and pro- Programs should consider that do- donors and recipients to provide the vide them with the results of such nors may have interests in learning program with medical updates if fi testing, inform them of the signi - the outcome of their donation, they learn of serious genetic or other cance of any medical conditions including whether any children conditions that are pertinent to the that are discovered, and offer donors have resulted from their participa- health of individuals sharing genetic and recipients referral if further tion. Programs should clearly inform relationships or might be significant counseling or medical care is donors and recipients before initi- to the health of a donor's future warranted. ating care, what, if any, information children. Donors should be given clear will be shared; this preference should Programs are strongly encouraged notice that although they may be documented. to develop and make available writ- withdraw from the donation Programs should caution partici- ten policies setting out the mecha- process at any point, they no pants that policies related to infor- nisms for collecting medical longer have dispositional control mation sharing are not guaranteed updates from donors and recipients, over their donated gametes or and, if applicable, for making avail- able or distributing newly acquired Received January 9, 2019; accepted January 10, 2019. medical information to individuals Correspondence: Ethics Committee, American Society for Reproductive Medicine, 1209 Montgomery Highway, Birmingham, Alabama 35216 (E-mail: [email protected]). whose health may be impacted by this information. Fertility and Sterility® Vol. 111, No. 4, April 2019 0015-0282/$36.00 Donors, recipients, and programs Copyright ©2019 American Society for Reproductive Medicine, Published by Elsevier Inc. https://doi.org/10.1016/j.fertnstert.2019.01.018 must recognize that they have a 664 VOL. 111 NO. 4 / APRIL 2019 Fertility and Sterility® unique and ongoing moral relationship with each other, their genetic and ancestral origins and in being able to act on and this obligation does not end with the procurement of that information. Donors have an interest in being able to gametes or the donation of embryos. Evolving medical donate, being protected in the process, being treated fairly if technology, laws, and social standards will likely require injuries occur, and not having obligations imposed on them reevaluation of these relationships throughout the lifetimes without their consent. They also may have an interest in hav- of the parties involved. ing contact with individuals born as a result of their donation. Contact between donors and individuals born as a result The use of sperm and egg donors in reproductive medi- of their donation has become an issue of special importance, cine, as well as the donation of embryos from individuals with many websites offering assistance to donor-conceived who themselves were enrolled in assisted reproduction, is people wishing to trace their genetic origins. This develop- now firmly established practice. As a result, concerns ment raises the possibility of unexpected contact between do- regarding the ability to share information related to the ge- nors and persons conceived from donated gametes or netic, health, and ancestral past history of the donors have embryos, as well as between other unknown genetically arisen. Less attention, however, has been given to the interests related parties that may be unaware of a donor's participation of the donors themselves, such as privacy, information about (for example, children of gamete and embryo donors who medical or genetic conditions discovered through screening share a genetic link). Moreover, heightened sensitivity to or subsequent medical care if injuries occur as a result of the interests of individuals born as a result of donation in donation, selection of recipients, knowledge of outcome knowing their genetic and ancestral histories suggests that from pregnancies resulting from their donated gametes and donors may bear some responsibility in the donation process embryos, disclosure of adverse pregnancy outcome events, to facilitate the provision of accurate information about pedi- and contact or noncontact with individuals born as a result gree and their family health history. The interest of individ- of their participation. uals knowing their origins, however, neither requires The term ‘‘donor’’ has been used conventionally for de- knowledge of the specific identity of the donor nor extends cades to describe an individual who provides gametes (eggs to contact with the donor. It is also unclear to what extent do- or sperm) that have been manipulated outside the human nors must go in providing updates about their health informa- body with the intent of producing a pregnancy in a recipient. tion for the benefit of recipients or genetically related Typically, gamete donors do not intend to establish a legal individuals. However, increased public attention to this issue relationship (that is, no parental rights or responsibilities) suggests the presence of evolving responsibilities for persons with any resulting child. The present statement focuses on to consider before donating gametes or embryos to enable matters that affect both egg and sperm donors, as well as in- others to have children. dividuals who donate embryos to programs for reproductive Before gamete or embryo donation occurs, informed con- purposes. Important issues include updates about medical his- sent requires donors to be honest about their family and per- tory and the possibility of later contact between participants. sonal health histories, and their personal behaviors, to Differences will be taken into account where relevant in the ascertain genetic and health risks that could affect the well- discussion. being of genetically related individuals. Less clear is the The involved parties in gamete donation and embryo extent to which, after donation, donors have ongoing respon- donation are the donors,therecipients or intended parents, sibilities to keep programs or recipients informed of their and the individuals born as a result of the donation. These health status or disclose any new medical findings that might parties have distinct but, at times, competing interests. be of interest to parents to protect the health of children born These interests may give rise to rights and corresponding from donation. obligations. At present, there is little consensus about Another area of uncertainty relates to the independent in- how to balance conflicting interests or define the rights terests that donors may have in the treatment process and its and responsibilities of donors, recipients, and programs. outcomes. Whereas some donors may be content with simply For this reason, it is especially important that programs providing their gametes or embryos, others may be interested are explicit about expectations regarding future informa- in knowing more personal information about the recipients or tion sharing and contact between donors and individuals the outcome of their donation, including any complications born as a result of donation. that may arise (1). These interests may conflict with the inter- Recipients