Disclosing Genetic Origins to Donor-egg conceived Children: Engaging Parents, Children, and Their Egg Donors

Principal Investigators

Dates: 11/1/2014 - 11/30/2016

Co-Investigators:  Patricia Hershberger, Bilgay Izci Balserak, Patricia Hershberger, Diana Wilkie, Jennifer Hirshfeld-Cytron

Abstract: A critical and yet unexplored health problem for genetically-linked egg-donor families surrounds understanding how the disclosure decision process occurs overtime in families and how best to involve each of the genetically-related family members in that process. To address this gap, the aims of this study are to: Aim 1) evaluate the feasibility of completing follow-up interviews with 3 egg-recipient women that participated in our research 10 years ago and completing new interviews with their genetically-linked egg-donor family members (egg donors, biological fathers, and resulting children); and Aim 2) develop a preliminary understanding about the disclosure decision process among 3 genetically-linked donor-egg families (i.e., egg donors, egg-recipient mothers, biological fathers, resulting children) to prepare for a larger study. Recruitment will proceed by re-contacting 7 donor-egg recipient women that participated in our original research that examined their disclosure decisions 10 years ago during their donor-egg pregnancies and gave permission to be re-contacted for follow-up research.

We will expand the scope of our original research to obtain the perspectives of other genetically-linked donor-egg family members by interviewing, with permission, the recipients’ egg donors, husbands, and children. If we are unsuccessful in accruing the 3 of our original donor-egg families (3-5 individual interviews per family unit), innovative recruitment methods that were successful in our prior research (e.g., multiple infertility clinics, Internet) will be implemented to obtain the necessary sample (i.e., donor-egg recipient families 7-10 years post donor-egg conception) to conduct Aim 2. Each adult participant will complete an open-ended digitally recorded, interview and children will complete a draw-and-tell interview. Descriptive statistics and content analysis will be used to evaluate Aim 1; a descriptive, qualitative thematic analysis will be used to achieve Aim 2, where concepts derived from the interviews and children’s draw-and-tell data will be grouped into categories that reflect the themes in the data to provide a preliminary description of the disclosure decision process among 3 genetically-linked donor-egg families.

The findings will serve to guide the development of a planned, larger, prospective, longitudinal study that will examine the disclosure decision process of genetically-linked donor-egg families in more depth. Because a larger study of this type has never been completed and will add significantly to science, we anticipate the findings will assist with the formulation of professional guidelines and may also inform public health policies. They will promote understanding of intergenerational and interfamily communication in other areas of complex genetic families and assist us with the development of counseling and educational interventions.

International Society of Nurses in Genetics