Needs assessment for those donating to stem cell research

Objective

To assess information needs and decision making among couples donating embryos for stem cell research from outside programs.

Design

Qualitative and quantitative interview report.

Setting

Academic medical center.

Patient(s)

Forty-five couples donating embryos to stem cell research.

Main Outcome Measure(s)

Likert scales were used to assess whether participants regarded embryos as children and whether donation was analogous to organ or blood donation. Use of counseling, consideration of disposition options, and value of the interview were assessed. Recorded responses were analyzed for themes.

Result(s)

The average length of cryopreservation was 4.8 years. Twenty percent of the embryos were created with donor gametes; 53% of respondents viewed embryos as completely different from children; 31% and 27% considered embryo donation “identical” to organ and blood donation, respectively; 47% chose stem cell research to help others; 96% had not sought counseling in making their decision; and 20% were told they could not donate embryos to other couples.

Conclusion(s)

Although many couples had questions/concerns regarding disposition, few sought formal counseling. Outside programs may unnecessarily limit the option of donation to other couples. Guidelines are needed to ensure that couples making embryo disposition decisions are properly informed of all options, that third-party gamete issues are addressed, and that psychological support is offered.

Key Words: Stem cell research, embryo disposition, patient education, psychological support