Facilitating the ethical sourcing of donor hematopoietic stem cells for cell and gene therapy research and development

Area of Science:

• Hematology
• Immunology
• Regenerative Medicine

Background:

• Unrelated stem cell donor registries (DRs) are increasingly involved in cell and gene therapy (CGT).
• Hematopoietic stem cell (HSC) donation is crucial for CGT advancements.
• Understanding donor perspectives is vital for registry engagement in CGT.

Purpose of the Study:

• To explore the values, concerns, needs, and expectations of the public and donors regarding HSC donation for CGT.
• To identify key areas for improvement in donor communication and care within CGT contexts.

Main Methods:

• Conducted seven focus groups in 2019 with the public, prospective donors, and existing donors.
• Participants were recruited from the Anthony Nolan Donor Registry in the UK.

Main Results:

• Participants raised concerns about the potential for increased donation frequency.
• Concerns were also noted regarding incidental findings during the donation process.
• A strong need for more detailed information on research types, purposes, and potential outcomes was expressed.

Conclusions:

• Addressing donor concerns, needs, and expectations is essential for maintaining high standards of donor care and safety.
• Proactive communication and education are critical for registries engaging in CGT.
• Ensuring donor trust is paramount for the sustainable growth of CGT.