Reproductive Ethics · ART Ethics
Ethics Committee of the American Society for Reproductive Medicine, 2018 · Fertility and sterility
Professionals who discover misconduct or other undisclosed information that would be material to the participation of another party (such as a donor, gestational carrier, intended parent, or lawyer) in an assisted reproductive technology arrangement should encourage disclosure to that party. In some instances, it is ethically permissible for the physician either to disclose material information to the affected party or to decline to provide care. In all cases involving the legal status or rights of the parties, referral to legal professionals is advised. This document replaces the document of the same name, last published in 2014 (Fertil Steril 2014;101:38-42).
Reproductive Ethics · ART Ethics
Ethics Committee of the American Society for Reproductive Medicine, 2017 · Fertility and sterility
Fertility programs may withhold services from prospective patients on the basis of well-grounded reasons that those patients will be unable to provide minimally adequate or safe care for offspring. This document was reviewed and updated; this version replaces the previous version of this document, last published July 2013 (Fertil Steril 2013;100:50-53).
Reproductive Ethics · Third Party Reproduction
Indekeu A, 2025 · Human Reproduction
Abstract
The general point of view on disclosure of the donor conception to the offspring experienced a major change over the years. From the outset, non-disclosure was imposed by medical professionals. Decades of debates followed, discussing if disclosure or non-disclosure would be in the best interest of the donor-conceived person, before the recommendation to disclose the donor conception to the offspring was integrated in professional guidelines such as those of ASRM (2013) and ESHRE (2024). This change in view was supported by research findings showing that late disclosure (and often discovery) has a negative impact on the wellbeing of donor-conceived people, that early disclosure is not burdensome for donor-conceived children (moreover, it is preferred by donor-conceived people), and that early disclosure is associated with better well-being of donor-conceived people during adolescence. Moreover, societal changes, such as the technological development of direct-to-consumer-genetic testing, have made non-disclosure impossible. Lastly, the framing of disclosure as a question concerning ‘the best interest’ of donor-conceived people has been replaced by a framework that information about one’s origin concerns a fundamental human right.
Not only did the recommendation regarding disclosure/non-disclosure changed, also the knowledge about disclosure increased. While initially disclosure was often approached as a dichotomous act, research findings showed that disclosure occurs much more in layers. Moreover, disclosure is not a one-off activity, but (as preferred by donor-conceived people themselves) an ongoing conversation over the family-life course, that continues when the child grows up. Besides, disclosure is not a unilateral process in which only parents take up an active role, but it is an interactive process in which parent and child co-create their family-story. Lastly, disclosure does not only concern the origins of the child, but it is also a family-building story, in which parents formed their family in a different way they initially imagined.
In relation to the actual disclosure process, studies have shown that parental confidence is generally associated with disclosure and a lack of confidence (including uncertainty around the language to use, the best way and time to disclose, and finding the information difficult to share) is associated with non-disclosure. A recent literature review showed that many participants across studies reported feelings of being unprepared, isolation and anxiety around the disclosure decision and process, and express a desire for support. Parents would like to hear experiences from other parents and to have access to resources, such as storybooks and movies, and networking opportunities for the donor-conceived people as they might enhance feeling comfortable with the disclosure process. However, support and advice were not always provided.
This presentation reviews the latest existing empirical data regarding the disclosure-process (factors that might influence the process, outcomes, experiences of parents and donor-conceived people) and will especially address how, psychosocial as well as medical, professionals can support families in their ongoing conversation about their family-building, pre-, during and post-treatment. Furthermore, challenges and limitations of offering ongoing support will be discussed as well, based on an inquiry conducted in 10 jurisdictions.
Policy and Regulation · Access and Coverage Policy
Van Der Poel S et al., 2018 · Fertility and Sterility
There are reports that define the significant unmet need for access to fertility care and infertility interventions for heterosexual couples - those who experience involuntary childlessness and who desire a biological child. This need for access to care rarely measures those couples in non-heterosexual relationships, single individuals or in key/neglected populations. This disparity in recognition of need, and resultant lack of access to care is glaring. Universal access and attainment of the highest standard of care requires the provision of high-quality information and services that fulfills, protects and respects all individuals. The objective of this study was to identify the key principles that support access to fertility care and infertility interventions, and to provide a human rights framework to guide processes during the development of draft recommendations to the World Health Organization (WHO) for clinical practice. To evaluate the public health and human rights and gender impact on infertility, a literature review and systematic analysis were conducted to look at the following questions. What are the existing policies, public health directives and research evidence gaps impacting gender and human rights in the context of involuntary childlessness and infertility; and, What human rights principles guide the development and implementation of fertility care and infertility related laws, policies and systems? A detailed search strategy in collaboration with the WHO-HQ librarian, introducing various combinations of a predetermined set of terms was undertaken to identify primary literature, systematic reviews and gray literature, including documentation regarding current status of human rights and gender equality within policy and practices. Using the search strategy defined, we were able to identify 488 articles and documents, of which 102 were found appropriate. They were then categorized using 9 principles previously identified by WHO and used to address the topic of contraception. From this process, we generated a list of 12 principles which will be presented that cover issues such as non-discrimination, non-stigmatization as well as informed-decision making and autonomy, sharing of benefits and ensuring provision of care that includes the recognition of the health and well-being of the parent or parents as well as the children born. During the systematic review of the published data and evidence for the development of draft clinical recommendations to be presented to and for the World Health Organization consideration, it was clear that a human rights framework was required. Our systematic review process used research and policy evidence to support the development of a framework of principles that can better ensure different human rights dimensions are clearly and systematically integrated into the provision of fertility care information and fertility interventions and services.