Perspectives on early disclosure support for donor-conceived families
Expanding the digital, donor-assisted conception Tool to Empower Parental Telling and Talking (TELL Tool) intervention to the pregnant and early parenthood periods (Hershberger, 2026)
Hershberger, P. E., Adlam, K., Richardson, M. B., Miller, A. L., Fortin, C., Driessnack, M., Grotevant, H. D., Klock, S. C., Pasch, L. A., & Gallo, A. M. (2026). Expanding the digital, donor-assisted conception Tool to Empower Parental Telling and Talking (TELL Tool) intervention to the pregnant and early parenthood periods: Findings from a qualitative study. JMIR Formative Research, 10, e79024. https://doi.org/10.2196/79024
Geographic Region: United States
Research Question: What are the views and needs of pregnant and new parents who used donor-assisted conception - and the clinicians who work with them - regarding disclosure to their children?
Design: Qualitative descriptive study. Data were collected between September 2023 and February 2024. Each participant completed a one-on-one, semi-structured interview conducted over Zoom, lasting an average of 45 minutes for parents and 36 minutes for clinicians. Interviews used a “think-aloud” method, where participants verbalize their thoughts as they work through questions.
Sample: 20 parents and 10 clinicians. Parents ranged in age from 27 to 52 years. Six were pregnant at the time of the interview and 15 were new parents with children aged 3 to 24 months (one participant was both pregnant and a new parent). The majority of parents identified as female (18), White (15), and straight (18). Fifteen were married or living with a partner. Types of donation used included egg (n=11), sperm (n=5), embryo (n=3), and double donation (n=1). Donor anonymity type was split between nondirected (anonymous) and directed (open-identity) donors. Clinicians (n=10) represented a range of disciplines including Advanced Practice Nurses (n=4), Registered Nurses (n=2), a Psychologist, a Clinical Counselor, a Social Worker, and a Physician. They worked in fertility/infertility (n=4), obstetrics and women’s health (n=3), and family and reproductive health settings (n=3), with experience ranging from 3 to 47 years. Nearly all clinicians identified as White (9) and female (8). Notably, half identified as sexual or gender minorities (lesbian, bisexual, or queer). One clinician also participated as a parent. Recruitment used multiple channels including online advertisements targeted at pregnant individuals and new parents, professional email lists for fertility and obstetrics clinicians, and the research team’s newsletter.
Key Findings
Theme 1: Reasons for What Matters Most
All 20 parents said they intended to tell their children about their donor conception origins, most citing values like honesty, transparency, and avoiding shame. As one parent said, “I want it to be clear. I want it to be transparent. I don’t want there to be any shame attached to it.”
Parents also wanted their children to know they were deeply wanted and intentionally created.
Several parents reported that no healthcare professional had discussed disclosure with them, even within the required counseling session. One said: “No, not a soul. Nobody except for the therapist, and that was because [it was required].”
Theme 2: Managing Emotions, Conflicts, and Needs
Most parents described a need for emotional support that they felt had been largely absent from their clinical care. Clinicians, particularly those outside fertility settings, also described feeling genuinely unprepared to counsel families on disclosure. One clinician said plainly: “Oh, I feel completely unqualified to do that [educate parents about disclosure]. I feel like that’s an incredibly personal, like, parent decision. And I don’t think it’s something that I have any training or knowledge and feel confident, giving any advice about at all whatsoever.” Parents experienced this gap directly. One parent observed: “…but I feel like every time I’ve hit a healthcare professional with like, ‘she’s donor conceived,’ like they are like deer in headlights, like they don’t know what to do. They don’t know what to say.”
Even clinicians who recognized parents’ emotional needs described being constrained by time. One said, “In my current practice, I am [time] limited. We only have 15-minute appointments. And I have to make sure I touch on all the important things…. And they have to check with their insurance company, etc., etc. So, I hadn’t even thought of talking to [patients] about that [disclosure to their children].” Another clinician added that parents’ emotional needs around family stigma alone were time-consuming: “So usually what takes the most amount of time is just them telling me about the family situation and how they’re afraid their children [will] get disowned.”
Several parents used the language of grief and loss to describe their experience of using donor-assisted conception. One parent described the emotional weight of the selection process: “It’s really emotional going through the process of looking at people’s pictures [to select a gamete donor]. It’s like you’re shopping for somebody that’s like you. But nobody is gonna be like you. And you have this weird mixture of excitement but sadness…. And you need to get through all that in order to make it to the end stage of being the parent, and then from there on out, being able to tell them… So that you tell them in a healthy way. And in order to get to the point of being able to tell them in a positive way, you have to process your own grief and trauma.”
Fear that their child would reject them or feel like a second choice was one of the most consistently voiced concerns across the parent interviews. Parents described both the emotional pain the fear evoked and how it shaped how they thought about disclosure. One parent shared, “the biggest question that comes to my head, and my greatest fear is still acceptance. Her, you know, accepting what I did. And not finding faults in it at the end of the day is like my greatest fear.”
Several parents worried about their child feeling like a “last resort”: “I don’t want them to ever feel like they are second choice, because obviously it’s like ‘Oh! She tried, she tried, she tried it, didn’t work, and she couldn’t have one the other way. So her last resort was us.’”
For parents in two-parent families, partner disagreement was a distinct and significant stressor. While some couples described being aligned, others were at opposite poles of the spectrum. Even among couples who broadly agreed on disclosure, the specifics (when to start, how often to bring it up, what to say to a very young child) could be a source of friction. One parent recounted their partner’s resistance: “He’s like, ‘Our kids are so little. Why is this a conversation that we’re having right now?’” Another parent reported that they had largely avoided the conversation altogether: “We’ve not had much discussions about that because we’re a little bit confused [about how to tell].”
Theme 3: Desired Content for Support
Parents wanted help understanding how their choice of donor (e.g., anonymous/nondirected versus open-identity/directed) would shape the disclosure process and their child’s future access to information.
Parents wanted more information about the disclosure process itself, specifically when to start, what frequency of conversations was appropriate, and what “tell them early” actually looked like in practice with an infant or toddler.
Parents wanted explicit guidance on what words to use, both for the donor and for others within the donor network. Many described uncertainty about terminology, even in the day-to-day language of their own families.
Several parents raised a need that is often overlooked in the disclosure literature: guidance on how to talk with extended family, friends, and the broader social world. Donor conception doesn’t exist in a family bubble, and families with limited language and support for their wider network face additional complexity.
Parents and clinicians almost unanimously wanted perspectives from donor-conceived adults, and importantly, they wanted DCP voices framed around practical guidance, not cautionary testimony.
Peer connection with other parents navigating disclosure was also frequently mentioned. Some parents wanted to hear from parents who were “ahead of their timeline,” while others said talking to other parents would cause them to second-guess themselves.
Parents, especially those with open-identity donors, expressed significant confusion and anxiety about how to navigate relationships with donors, donor siblings, and the donor’s family.
Theme 4: Recommended Support Characteristics
Most parents said disclosure support should begin well before a successful pregnancy, ideally before or during the donor selection process, when consequential decisions with long-term disclosure implications are still being made. At the same time, clinicians were divided on timing. Some felt support was best introduced once pregnancy was confirmed and parents were emotionally ready to engage. Others saw value in multiple touchpoints across the entire journey.
Parents and clinicians were clear that support delivered in a single format would inevitably exclude some families. Multiple delivery modes (video, audio, and written text) were seen as essential to reaching parents with different learning styles, cognitive loads, and life circumstances.
Customization was understood not as a convenience feature but as a signal of inclusion. Parents and clinicians were explicit that support designed around a default family type would feel alienating to the many families that don't fit that template. They asked for content tailored to family type (single parent by choice, same-sex couple, heterosexual couple), donation type (egg, sperm, embryo), and donor anonymity type.
Over half of parents wanted a way to connect with other parents navigating similar experiences: “It’s nice to know you’re not alone.”
Privacy protection and low or no cost were identified as essential features. Cost was seen as a barrier for families already managing expensive fertility treatment.
Clinicians emphasized that support must be evidence-based and tested. They needed confidence in its validity before recommending it to patients.
Editor’s Note: All parents in this sample intended to disclose and volunteered to participate in a study about telling, so these findings reflect a motivated, disclosure-positive group. The emotional complexity described is real and important, but may not capture the full range of experiences among parents who are more ambivalent or opposed to disclosure.
Limitations: The sample is largely White, female, English-speaking, and US-based, limiting generalizability to other racial/ethnic groups, languages, and countries. The gap between intention and action is critical context here. The study does not examine how race, ethnicity, class, or cultural background shape parents’ experiences of donor conception or their disclosure decision-making.
Applications: Most clinicians outside of fertility settings feel unprepared to counsel donor-conceived families about disclosure, yet many donor-conceived families encounter these clinicians during obstetric care, pediatric visits, and primary care. Professional education about disclosure, including basic language, what research shows, and how to refer families to appropriate resources, is an unmet need across disciplines. Very little is known about what makes disclosure experiences high-quality beyond timing. Components like ongoing conversations, how donor kinship relationships are navigated, how donor type shapes the experience, and how racial and cultural context affects family communication patterns are important directions for future research. The ASRM already recommends psychoeducational counseling about disclosure, but this study suggests the counseling requirement is inconsistently implemented and often perceived by parents as a procedural hurdle rather than meaningful support. Clearer standards, better training, and integration of support across clinical settings might strengthen the translation of recommendations into practice.
Funding Source: American Society for Reproductive Medicine (ASRM) Research Institute through an educational grant from EMD Serono, a pharmaceutical company that manufactures fertility medications
Lead Author: Patricia E. Hershberger is the Rhetaugh G. Dumas Endowed Professor and Chair of the Department of Health Behavior and Clinical Sciences at the University of Michigan School of Nursing, where she leads a transdisciplinary research program focused on improving outcomes for individuals and families created through donor-assisted conception. No personal connection to donor conception was disclosed. Hershberger served on the ASRM Taskforce on the Needs and Interests of Donor Conceived People.
Regulatory Context
The United States has no comprehensive federal legislation governing donor conception, with regulation primarily occurring at state level, creating a patchwork of laws across the country. The Food and Drug Administration (FDA) provides minimal federal oversight, mainly focused on screening requirements for disease prevention.
There are no federally mandated limits on the number of children conceived from a single donor. The American Society for Reproductive Medicine (ASRM) recommends limiting donors to 25 live births per population area of 850,000, but this is voluntary and not enforced. Colorado became the first state to establish a statutory limit in 2022, capping donor use at 25 families per donor, regardless of location, effective January 2025.
No centralized national registry exists to track donor-conceived births OR donors, making it difficult to enforce any limits in practice.
Commercial donation is permitted throughout most of the United States. Donors can be compensated for their gametes.
Access to donor conception is generally open to a wide range of individuals regardless of marital status, sexual orientation, or gender identity. Most major medical organizations support the position that fertility treatments should be available to any individual who is fit to parent.
The U.S. does not have national laws prohibiting anonymous donations, but this practice is gradually changing. Colorado’s 2022 “Donor-Conceived Persons Protection Act” (effective January 2025) bans anonymous donation and gives donor-conceived individuals the right to access their donor’s identity upon reaching age 18. In January 2024, the Uniform Law Commission amended the Uniform Parentage Act to require disclosure of donor identifying information to adult donor-conceived persons upon request, though states must adopt this amendment for it to become law in their jurisdictions.
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