Final Report (all chapters)

controversial not because it provides an effective means to customize conception (which
currently it does not), but rather for its potential ability to undermine widely shared cultural
conceptions of equality and tolerance, those intangible values so often taken for granted but
indispensable to any functioning democracy. 56
A second instance of customized conception is the use of PGD for tissue matching.
Typically, this procedure is attempted when parents with a child affected by an incurable disease
are unable to find a compatible tissue donor. In these cases, ART specialists may resort to PGD
to screen for specific physiological attributes. For example, doctors may try to strengthen the
failing immune system of a child affected by Diamond Blackfan Anemia (DBA), a painful and
incurable disease, by extracting stem cells from the umbilical cord of a baby selected to be a
tissue match.
What should we make of this practice? Are we facing a deplorable application of PGD, or
are we simply using PGD for therapeutic purposes? Is the well-being of the children created
solely to benefit an older sibling imperiled, or can we assume that they will be welcomed into the
family? Do these manipulative medical procedures prepare us to more readily accept future
reproductive techniques expressly designed to customize conception rather than to treat a
medical condition? Medical professionals offer the following rationale for performing this
procedure: Tissue matching is a straightforward case of a therapeutic use of PGD. A young child
would die if the procedure were not performed. In addition, the older sibling is not saved at the
expense of the younger one. The life of the younger child is not traded against the life of his or
her afflicted older sibling. Furthermore, what reasons could possibly justify losing a child if he or
she could indeed be saved?
Pro-life groups offer a very different assessment. They point to the instrumental nature of
this procedure, i.e., a child being conceived exclusively to benefit an older sibling. They also are
disturbed by the need to create (and discard) numerous embryos before a suitable one is found.
Advocates for the disabled, for their part, have vehemently criticized genetic screening and tissue
matching, arguing that it amounts to a eugenic program against the disabled. According to these
groups, PGD likely will foster a culture of perfection incompatible with liberal values of mutual
tolerance and respect. The news media, for its part, has fueled these controversies by
characterizing tissue matching as the creation of “designer babies.” 57 The term is obviously
meant to provoke, but it is not entirely without justification.
It is useful to examine how the British Human Fertilisation and Embryology Authority has
addressed this dilemma. The British Parliament established the HFEA in 1990 when it passed the
Human Fertilisation and Embryology Act. Among other things, the Parliament delegated to the
HFEA responsibility for addressing the ethical controversies generated by new developments in
56
57
Francis Fukuyama, Our Post-Human Future: Consequences of the Biotechnology Revolution (New York: Farrar,
Straus and Giroux, 2002).
Shaoni Bhattacharya, Banned 'Designer Baby' Is Born in UK (New Scientist, June 19, 2003 [cited April 26,
2006]); available from http://www.newscientist.com/news/print.jsp?id=ns99993854; Colin Blackstock,
"Matched and Hatched, Britain's First 'Designer Baby' Born to Save Brother," The Guardian, June 19, 2003.
94