# Feasibility and Pilot Testing of the TELL Tool Among Gamete and Embryo Donation Recipient Parents

> **NIH NIH R34** · UNIVERSITY OF ILLINOIS AT CHICAGO · 2021 · $156,755

## Abstract

A radical paradigm shift is taking place where technology, notably the explosion in easy accessible direct-to-
consumer genetic testing (e.g., 23andMe) and a high consumer interest in genealogy (e.g., Ancestry.com), has
hijacked gamete (eggs, sperm) and embryo donation recipient (DR) parents' control over whether to
inform their children about their donor conception. Historically, the practice of gamete donation has been
shrouded in secrecy, however, the burgeoning use of direct-to-consumer genetic testing means that at any
point in an adult life, an uninformed donor-conceived person can learn their DNA does not match their
presumed ancestry of their parents and family members, putting into question their genetic relatedness to their
parents and launching a spiraling sequence of negative health consequences and trauma. Furthermore, the
lack of one's knowledge about actual genetic heritage in the age of precision medicine can be enormously
detrimental to health and can result in medical maltreatment, including death. To understand the phenomenon
of DR parents' disclosure in the U.S., we recently completed a 12-year longitudinal study that found 86% of DR
parents did not disclose to their donor-conceived children by age 11, which is supported by other research that
has estimated DR parents' non-disclosure as high as 91%. To address this serious problem and in accordance
with International Patient Decision Aid Standards, we developed a digital, tailored, multicomponent Tool
to Empower ParentaL DiscLosure (i.e., TELL Tool). The TELL Tool aligns with our Decision-Making Process
Model and the lessons learned from implementing CHOICES, a web-based, educational reproductive
intervention. The objective of this R34 study is to examine the feasibility, acceptability, and preliminary effects
of the TELL Tool intervention in a pilot randomized-controlled feasibility trial to determine intervention viability
and inform a larger, efficacy trial. An eBook with content about good parenting principles serves as the
attention control. Our Specific Aims in this mixed-methods study are: Aim 1 determine feasibility of the study
procedures (e.g., preliminary effects) by pilot testing the TELL Tool using a 2-arm randomized-controlled trial
with 60 DR parents using pre- to post-test measures for disclosure intention, competence, and anxiety; Aim 2
survey participating DR parents at 2 additional time points (4 and 12 weeks) post-intervention completion to
obtain meaningful outcome data about actual parental disclosure to their donor-concevied children; and Aim 3
refine the study tools through post-intervention/attention control written evaluations with participating DR
parents, input from our Parent Advisory Board, and cognitive interviews with 10 DR parents and 10 clinicians.
Integrating data from the three Aims will accomplish our objective and will 1) determine whether the TELL Tool
is viable and, if so, 2) inform the final implementation protocol. The value of our stu...

## Key facts

- **NIH application ID:** 10261460
- **Project number:** 5R34NR019278-02
- **Recipient organization:** UNIVERSITY OF ILLINOIS AT CHICAGO
- **Principal Investigator:** Agatha M. Gallo
- **Activity code:** R34 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2021
- **Award amount:** $156,755
- **Award type:** 5
- **Project period:** 2020-09-11 → 2023-07-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10261460

## Citation

> US National Institutes of Health, RePORTER application 10261460, Feasibility and Pilot Testing of the TELL Tool Among Gamete and Embryo Donation Recipient Parents (5R34NR019278-02). Retrieved via AI Analytics 2026-05-25 from https://api.ai-analytics.org/grant/nih/10261460. Licensed CC0.

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