Reproductive Ethics · ART Ethics
Ethics Committee of the American Society for Reproductive Medicine, 2018 · Fertility and sterility
Preimplantation genetic testing for monogenic diseases for adult-onset conditions is ethically permissible for a range of conditions including when the condition is serious and no safe, effective interventions are available. The Committee strongly recommends that a genetic counselor experienced with PGT-M counsel patients considering such procedures. This document replaces the document titled "Use of preimplantation genetic diagnosis for serious adult-onset conditions: a committee opinion," last published in Fertil Steril 2013;100;54-7.
Reproductive Ethics · ART Ethics
Ethics Committee of the American Society for Reproductive Medicine, 2017 · Fertility and sterility
Patient requests for transfer of embryos with genetic anomalies linked to serious health-affecting disorders detected in preimplantation testing are rare but do exist. This Opinion sets out the possible rationales for a provider's decision to assist or decline to assist in such transfers. The Committee concludes in most clinical cases it is ethically permissible to assist or decline to assist in transferring such embryos. In circumstances in which a child is highly likely to be born with a life-threatening condition that causes severe and early debility with no possibility of reasonable function, provider transfer of such embryos is ethically problematic and highly discouraged.
Reproductive Ethics · ART Ethics
Ethics Committee of the American Society for Reproductive Medicine, 2016 · Fertility and sterility
Medical providers have an ethical duty to disclose clinically significant errors involving gametes and embryos as soon as they are discovered. Clinics also should have written policies in place for reducing and disclosing errors. This document was reviewed and affirmed in 2015 and replaces the earlier document of the same name (Fertil Steril 2011;96:1312-4).
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.