Objective: A gene bank, comprising genetic material and environmental and family history data, is being established in the United Kingdom to improve the understanding of the etiology of orofacial clefting (OFC). This study aimed to identify factors that might contribute to participation in a cleft gene bank and what issues need to be considered in approaching parents to be included.
Design: A qualitative approach was adopted, using focus groups and interviews. Transcripts of audio recordings were analyzed using inductive thematic analysis.
Participants: A UK cleft center invited 100 families of children born with OFC to participate. Inclusion criteria included any parent of a child aged between 6 months and 16 years willing to take part. Sixteen parents participated.
Results: Participants were generally motivated to take part in a cleft gene bank because they value the discovery of new knowledge of the etiology of OFC. They wanted reassurance about the purpose and integrity of the project. Many conveyed shock at the diagnosis of cleft and offered mixed accounts of experiences with health care professionals. They suggested an individualized approach from a trustworthy and sensitive professional when being invited to join the gene bank, avoiding difficult times associated with new-baby challenges and issues related to the cleft.
Conclusions: This pilot study indicates that parents of children born with OFC would be supportive of developing a cleft gene bank, but sensitive issues need to be considered.