Final Report (all chapters)

eproductive medicine (See chapter 6.4 for a more detailed discussion of the act and the agency).
Whether the use of PGD for tissue matching should be allowed, and if so under what
circumstances, is exactly the kind of controversy the HFEA was designed to settle.
Until recently, it was HFEA policy to authorize PGD only when the procedure would also
benefit the future baby, for example, by preventing the birth of a child with an inheritable
disease. Thus, the HFEA favored a view of PGD that emphasized therapeutic applications, but
only in a very narrow sense. Not every therapeutic use of PGD is designed to benefit the childto-be,
and under HFEA policy, certain applications were prohibited. For instance, Diamond
Blackfan Anemia is not an inheritable condition, so performing PGD to produce a tissue match
for a child affected by DBA would benefit the older sibling but not the future baby. Consistent
with its policy, the HFEA turned down demands to authorize the use of PGD to save children
affected by DBA. 58
By contrast, the HFEA approved performing PGD to cure cases of
Thalassemia. Unlike DBA, Thalassemia is an inheritable disease. In this case, PGD benefits the
child-to-be as well as the older child.
Not surprisingly, parents whose PGD applications were turned down challenged the HFEA
policy in court. In July of 2004, following a string of judicial decisions, the HFEA changed its
policy regarding tissue matching to allow this procedure to be performed even when no
inheritable disease is involved. 59
One may or may not agree with HFEA policies, but there is one important benefit from
resolving this and similar controversies through the regulatory and judicial system rather than
through private choices. One provision of the British Human Fertilisation and Embryology Act
of 1990 requires the HFEA to explicitly include in its consideration the well-being of children.
While the parents of children affected by Diamond Blackfan Anemia understandably disagreed
sharply with the earlier HFEA policy on PGD, the policy was clearly informed by the HFEA
obligation to balance parental interests and the well-being of future children. As we have shown
in this chapter, private choices tend to privilege parental interest, to the detriment of ART
children. In this sense, a regulatory approach to deciding what at first may appear as purely
private choices is preferable to delegating these choices to parents and the medical profession.
4.5 Biomedical Research Involving Reproductive Tissues
The fourth and last policy area to be examined in this chapter is research involving
reproductive tissues. By reproductive tissues we mean oocytes, sperm, and embryos, either
human or animal. The lines of research discussed in this section can be grouped into two distinct
categories. On the one end, we find research aimed at exploring issues pertaining specifically to
human reproduction and infertility. This kind of research may loosely be referred to as ART
58
According to news reports, parents whose applications were turned down by the HFEA were able to get the
treatment in the United States.
59
"High Court Ban on 'Designer Babies' Overturned," The Guardian, April 8, 2003; 'Saviour Sibling' Perfect
Genetic Match for Brother (BioNews, 320, August 8, 2005 [cited April 26, 2006]).
95