University of Bristol
Wellcome Trust
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PEEP for Physics & Ethics at GCSE

 Designer Babies

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.

Opinion Poll

Proposition: "It is wrong to produce babies, tested to ensure the absence of harmful genes, to be tissue donors for sick siblings."
Strongly Agree
Strongly Disagree

Update to Whittaker Case.

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.

Ethical Issues

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?


 CASE STUDY 3 - The Masterton Family


What's your opinion?

Average rating

Current rating: 4/5 (from 1 votes cast)

Read comments

ILLUMINE 03-09-08 16:01
There's no need to go down this route any longer. Induced pluripotent stem cells can now be used
NOT RATED Judy Hosken 17-01-10 07:09
I think the HFEA should pay for the extra medical expenses incurred by the Whitakers and should admit they were wrong in their initial decision
NOT RATED Mrs HPN Ferreira 10-04-10 08:39
I fully sympathise with this family and their wonderful medical team. I would have done the same in their position and as a Christian, believe this to be done with God's permission. We lost a baby boy to whooping cough several years ago - a tragedy that could have been avoided had there been research done to fight this dreadful disease
NOT RATED science 9.1 22-10-10 09:54
THis is a really good piece of text
NOT RATED betsy sales Qld Qua 28-10-10 05:09
Its wonderful to read of the sussessful treatment of
Charlie, thank God for the skill of the Drs and the courage of the parents

Hope the future holds much joy for the whole family.
regards betsy sales
NOT RATED patricia and simon fuller 10-04-11 13:44
Have just watched the t.v. programme about this brave family and fully endorse the procedures they took to help save the life of their first born,Charlie. Have a happy and wonderful life, all of you as you do so deserve it. God Bless you.
NOT RATED 06-07-16 11:43
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