Ruth - Interview 19
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Ruth donated stem cells from her umbilical cord for medical research after giving birth to her son. She decided she would be willing to do this after seeing a recruitment poster during her 18 week scan appointment. Ruth took an information sheet home with her and then informed her midwife that she would like to take part. This was then recorded in her notes. Ruth explains that the poster and the information sheet were quite clear and easy to understand. Although she was not entirely sure of the specific details of the project she had read a lot around stem cell research and felt in general it was a worthy cause. On reflection she also feels it is more ethical to take stem cells from umbilical cords than aborted fetuses, and explains how this opinion has strengthened since becoming a mother.
Since the 18 week scan when Ruth first expressed willingness to donate her umbilical cord she heard nothing more about it until shortly before the birth when she signed consent. While Ruth was pregnant she had pre-eclampsia and so spent a fair bit of time in hospital before the birth. At 36 weeks it was planned that Ruth would have an early induction however there were complications and she ended up having an emergency caesarean. Once Ruth had come round after the birth she checked with her husband to make sure the umbilical cord was taken.
When discussing her reasons for donating stem cells from her umbilical cord she explains how it did not impinge upon her in any way and says “they’re only going to chuck it away anyway, so why not do it?” She has also taken part in previous biobanking research where she has donated blood for projects on diabetes and genetics. There are certain factors which determine her willingness to take part in such studies. Firstly she is more willing to donate to the NHS and universities because they’re for the general good or education purposes. She is less likely to donate to private companies as she is aware they would be profiting. Secondly she would be less willing to donate stem cells from more invasive areas such as bone marrow as this would be require more effort and discomfort but adds that if it was for a family member then she absolutely would do this. Thirdly she would be more cautious about giving personal details such as medical records and would have to be confident of the data protection beforehand.
Ruth’s attitude towards taking part in biobanking is that it is not a big deal; she takes part for the greater good and because she does not see a reason not to as she feels it doesn’t really affect her life. Ruth explains that she does not personally benefit from taking part but would not expect to and she is completely happy about this.