'Preimplantation Genetic Diagnosis 2018: Current Practice and Beyond', 9-10 November 2018
Page URL: https://www.bionews.org.uk/page_91379

Time to resolve the 'saviour siblings' issue

20 July 2004
By Juliet Tizzard
Director, Progress Educational Trust
Appeared in BioNews 267
The British media has spent the weekend speculating on a decision expected to be made by the Human Fertilisation and Embryology Authority (HFEA) this week on the vexed issue of 'saviour siblings'. The authority has to decide whether to relax its prohibition on the use of PGD (preimplantation genetic diagnosis) and tissue typing in cases where the embryo is being selected for the tissue type alone.

One of the main concerns voiced in the saviour siblings debate is the potential impact of the procedure upon the children born. If they are created simply to be a tissue donor for a sick sibling, will they grow up feeling less valued than they ought to be? With only a handful of children around the world who have been born as a result of PGD and tissue typing, it's a little early to tell. But there must be a large number of children who have been born through natural conception whose parents hoped they might be a tissue match with an older sick sibling. Whilst we don't know much about these children either, we have no evidence that they have been harmed by knowing that potential tissue donation to their sibling was part of the reason that they were planned.

We already know of at least two children in this position. Zain Hashmi's younger brother, Harris, and Charlie Whitaker's younger sister, Emily, were both conceived naturally, but sadly turned out not be a tissue match for their sick siblings. Those who worry about the psychological welfare of the saviour sibling, particularly those who turn out not to be a match, should have their nerves calmed by the apparent wellbeing of these two children.

The existence of children like Harris Hashmi and Emily Whitaker demonstrates that PGD and tissue typing is not an instance of a new technology creating a problem that didn't already exist. Instead, with the availability of the 'saviour siblings' technique, an existing decision faced by some parents has been transplanted from the within the four walls of a couple's home to the boardroom of the HFEA. Maintaining the ban on 'saviour siblings' for non-inherited conditions won't make the issue go away: it will simply mean that British couples in this position are left with the rather slim chance of success offered by Mother Nature. Or, like the Whitaker family, they will go abroad for treatment.

What many parents seeking to use PGD and tissue typing to have another child want now is a speedy resolution to this issue. Politically motivated legal challenges and policy indecision have already led to terrible delays in patients getting the treatments they seek. With mothers running out of fertile years and sick children benefiting less from tissue transplants as they get older, time is something that these families simply do not have.

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