The Ethical Issues
Case Study 2: The Whitaker Family
Michelle and Jayson Whitaker’s son Charlie had a life threatening, but non-inherited blood condition, (Diamond Blackfan Anaemia, named after the doctors who first described it). Encouraged by the Nash success, the Whittakers applied to be allowed to screen embryos to provide a sibling who could be a donor for Charlie. The HFEA refused on the grounds that this was not a genetic condition, and therefore the embryo itself would not benefit from the screening process. The Whitakers went to the USA, where the law is not so strict, and after considerable physical and financial stress, produced Jamie, who is a match for Charlie and has since provided umbilical cord blood in a bid to cure him.
One year after receiving the transplant of cells from baby Jamie’s umbilical cord blood, Charlie Whittaker’s bone marrow has become normal, and he is free from the symptoms of DBA, a life threatening disorder, for which Charlie had to have blood transfusions every three weeks, and drug infusions nearly every night. Charlie will need to be followed up in the years to come, as he received pioneering treatment, and doctors and scientists will want to monitor its continuing effectiveness.
As a result of the Whittaker case, the HFEA has reviewed its policy on the use of PGD for tissue typing. Although the PGD procedure is not of direct benefit to the new embryo itself, the HFEA now authorise it in certain cases. The Fletchers, another couple with a DBA son, Joshua, have undergone PGD and produced the UK’s first “saviour sibling”, a daughter called Jodie, who is a genetic match for her brother.
Revisit the Opinion Poll. Have you changed your view about the use of PGD for tissue typing to try to produce siblings who can provide healthy donor tissues for sick children? Has the success of the Whittaker case influenced your opinion?
Taking a sample of umbilical cord blood from a newly born baby can be argued to be fairly non-invasive, as the umbilical cord must be cut from the baby anyway. However, the baby itself obviously cannot give consent. This raises the issue of proxy consent, in which someone else consents on behalf of an underage person, or someone whose disabilities prevent him or her from consenting.
Do you believe that it is ethical for a parent to give consent to harvesting tissues such a cord blood?
What if the tissue to be collected required a more invasive procedure that might cause some distress to the new baby? Where would you draw the line?