The Birds, the Bees, and Biases: What Makes Donor Conception Research So Complex?

A Comprehensive Analysis of Research Design and Implementation Issues

"To study humans is to confront the limits of objectivity, for we cannot step outside ourselves to observe ourselves with perfect clarity. We are both the microscope and the specimen."

- Margaret Mead

Making truly informed decisions about donor conception requires three key elements: research findings, practitioner expertise, and – critically – the varied lived experiences of donor-conceived people (DCP). However, conducting research in this field presents significant challenges. The complex nature of donor conception - involving multiple stakeholders, long timeframes, and sensitive personal experiences - creates unique obstacles for researchers trying to build a strong evidence base. In this post, I will explore the challenges researchers face when studying donor conception, including issues of design, methodology, time, participant recruitment, and bias. Understanding these challenges is crucial for practitioners, policymakers, and families as they evaluate and apply research findings.

Challenges Related to Design

Research aims to understand complex phenomena and help people make informed decisions. In donor conception, this means studying how different aspects affect donor-conceived people, families, and donors so that assisted reproductive technology (ART) professionals, lawmakers, parents, and donors can make better-informed policies, recommendations, and choices.

Systematic reviews and meta-analyses provide the strongest evidence by combining results from multiple studies. In donor conception research, these prove difficult to conduct because there aren't enough similar studies to combine meaningfully and the field has not adopted standardized ways to measure outcomes. Different legal frameworks and changing social attitudes across time and place further complicate efforts to synthesize findings.

Randomized controlled trials (RCTs), while typically considered the gold standard for medical research, face fundamental limitations in donor conception studies. We cannot randomly assign people to use different types of donors or randomly decide when families should disclose donor conception to their children. In donor conception, the use of RCTs is largely restricted to studying specific interventions like counseling approaches or support services.

Cohort studies, which follow groups over time, offer valuable insights but face significant practical challenges. These studies often span decades, requiring substantial funding and dealing with high dropout rates as families move or lose touch. Case-control studies, which compare groups with different experiences, can struggle with finding appropriate comparison groups given the complex nature of family formation.

While large-scale statistical studies face many challenges, other research approaches can provide valuable insights into donor conception experiences. Literature reviews help us understand what we already know, identify gaps in our knowledge, and explore themes and patterns across different types of research. Case reports, while not generalizable to everyone's experience, can offer deep insights into how donor conception affects real lives. These studies can reveal how families talk about donor conception, how identities develop, and how different cultural contexts shape experiences. While they might not tell us "how many" or "how often," they help us understand "how" and "why", crucial questions for improving practices and support.

Challenges Related to Recruitment

Researchers generally strive for a representative sample, meaning the participants accurately reflect the key characteristics of the slice of the donor conception community being studied. Without proper representation, researchers will struggle to draw valid, generalizable conclusions. Representation in donor conception research is complicated by multiple intersecting variables that create distinct subpopulations. Some of these variables include:

• Type of Gamete Used (e.g., egg, sperm, embryo)

• Status of Donor Used (e.g., anonymous, identity release, known)

• Structure of Family (e.g., lesbian couples, gay couples, heterosexual couples, solo parents)

• Timing and Nature of Disclosure (e.g., early vs late, intentional vs accidental)

The intersection of these variables creates distinct subgroups with varying accessibility and willingness to participate in research. For example, a lesbian couple using an identity-release sperm donor who disclosed early represents a fundamentally different research population than a heterosexual couple using an anonymous egg donor who hasn't disclosed to their child. These complex patterns of variation make it difficult to obtain truly representative samples and draw generalizable conclusions about the donor conception experience.

Researchers must also carefully consider both statistical power and qualitative saturation when designing their studies. Statistical power requires having enough participants to reliably detect true effects and draw valid statistical conclusions, while saturation demands having interview and focus group data with sufficient depth and variation to fully understand the range of experiences and contexts.

Studies about donor conception can struggle with both inadequate power and insufficient saturation. Quantitatively, samples may be too small to detect significant effects or analyze by subgroups. Qualitatively, studies may lack the depth needed to capture the full complexity of experiences or miss important variations across different family configurations, disclosure patterns, and donor arrangements.

All of this means a crucial challenge lies in participant identification and accessibility. Research depends heavily on individuals' willingness and ability to self-identify within the donor conception community. For DCP, this requires awareness of their donor origins through either disclosure or discovery. Both recipient parents and donors must be willing to be transparent about their involvement in donor conception for meaningful participation in research. Parents and DCPs may be hesitant to participate in research that could potentially trigger difficult emotions about their identity and fertility journeys.

Access to these populations presents additional complications. Researchers often rely on convenience sampling or snowball recruitment methods, which can introduce bias. A 2022 study by Arocho et al. explored if a national panel could effectively identify donor-conceived offspring, gamete donors, and recipient parents. Data collected through the American Population Panel successfully identified 100 donor-conceived individuals (either known or suspected), 146 donors, and 147 recipient parents. The researchers concluded that national research panels could serve as viable recruitment methods for donor conception research, opening new possibilities for conducting more generalizable studies in this field in the future.

Challenges Related to Time

While regulations, recommendations, and cultural attitudes about donor conception can change rapidly, understanding these changes' actual impact requires decades of observation. This creates a fundamental tension: research findings from one decade might become less relevant as policies and practices evolve, yet we need long-term studies to truly understand how donor conception affects people.

Long-term studies face significant hurdles. Families may move, lose touch, or withdraw - particularly if they change their minds about discussing donor conception. This can bias results toward families who maintain openness about their donor conception experience. Research teams change over decades, making it difficult to maintain consistent approaches. Storing and protecting sensitive family data over long periods poses technical and ethical challenges. Plus, it's hard to keep studies going for decades - finding money for such long research is tough.

Challenges Related to Research with Children

Research with children requires extra care and special approaches. When studying children, researchers need permission from both parents and children themselves. While parents give legal consent, children should also agree to participate in ways they can understand. This becomes complicated in donor conception because researchers must be very careful not to accidentally reveal information about donor conception to children whose parents haven't told them it yet. They also need to protect children's privacy extra carefully.

Challenges Related to Bias

Understanding potential sources of bias is crucial for researchers, practitioners, and research consumers because it can affect the validity and generalizability of findings.

Selection bias represents perhaps the most significant challenge in donor conception research, manifesting through multiple mechanisms. Research samples typically over-represent families who have disclosed donor conception to their children. The exclusion of non-disclosing families creates a significant blind spot in our understanding of the donor conception experience. Studies predominantly capture the perspectives of early-disclosure families, limiting insight into the experiences, outcomes, and challenges faced by families who choose not to disclose or delay disclosure.

Studies often rely on self-selected participants who volunteer for research participation. These volunteers typically represent more engaged, resourced, and motivated members of the donor conception community. They may have stronger connections to donor conception related networks, more positive or negative experiences they wish to share, and greater comfort discussing personal family matters.

Social desirability and recall bias significantly impact donor conception research methodology and outcomes. The sensitive nature of donor conception can create pressure for socially desirable responses from donors, parents, and donor-conceived people, especially children. These challenges are compounded by the reliance on retrospective accounts, which introduce potential distortions in how experiences are remembered and reported, particularly regarding initial parental and donor decision-making processes, parent-child communication patterns, reactions to disclosure, and the evolution of family dynamics over time.

Challenges Related to Researcher Objectivity and Interpretation

The complexity of the "conception constellation" - the intricate network of relationships and roles within donor conception - creates distinct challenges. Researchers' connection to donor conception might significantly influence the research process subtly and overtly, from question formulation reflecting researcher assumptions to data analysis models inadvertently confirming existing beliefs. Emotional resonance with participant experiences may affect analytical distance. Newton (2022) highlighted the importance of reflexivity in donor conception research, exploring how her experiences as donor-conceived, an activist, and a researcher shape her work.

At the same time, integrating participatory research approaches in donor conception research represents a crucial methodological advancement that could acknowledge the expertise of lived experience while enhancing study relevance, validity, and impact. These approaches fundamentally transform traditional research structures by integrating stakeholder perspectives throughout the entire research process. Stakeholder advisory boards, comprising donor-conceived people, parents, and donors of varied experience, could play a vital role in guiding research priorities, methodology, and interpretation. Nunn (2022) and Zadeh (2024) engaged donor-conceived people to co-design elements of research projects. Shared decision-making processes established early in the research journey ensure stakeholders collaborate in developing research questions, determining appropriate methodologies, designing recruitment strategies, interpreting findings, and planning dissemination approaches.

The Last Word

While research in donor conception faces significant methodological hurdles, these limitations don't diminish its value. Instead, they highlight the importance of considering research findings alongside other forms of knowledge, like the lived experiences of DCP. By understanding these research challenges, we can better evaluate and apply evidence while recognizing where other forms of insight may fill crucial gaps. Moving forward, participatory research approaches offer promising ways to strengthen the evidence base. These approaches transform research from being done "about" donor conception to being conducted "with" the donor conception community, ensuring studies better reflect stakeholder needs and experiences.

Citations

Arocho, R., Lozano, E. B., Hansen, R. L., Rehani, R., Thompson, A. F., Fleming, T. G., & Cooksey, E. C. (2022). Family forms survey: Identifying donor-conceived offspring, donors, and recipients in a national panel. Survey Methods: Insights from the Field. Retrieved from https://surveyinsights.org/?p=16931.

Newton, G. (2022). Doing Reflexivity in Research on Donor Conception: Examining Moments of Bonding and Becoming. In: Shaw, R.M. (eds) Reproductive Citizenship. Health, Technology and Society. Palgrave Macmillan, Singapore. https://doi.org/10.1007/978-981-16-9451-6_12.

Nunn, J. S., Crawshaw, M., & Lacaze, P. (2021). Co-designing genomics research with a large group of donor-conceived siblings. Research Involvement and Engagement, 7, 89. https://doi.org/10.1186/s40900-021-00325-7.

Zadeh, S., Jones, C., & Jadva, V. (2024). 'I have to remind myself that everyone's search is different': Experiences and outcomes of searching and not searching for donor connections among donor conceived adults. Human Reproduction, 39(12), 2722-2733. https://doi.org/10.1093/humrep/deae210.