Recent Developments in Taiwan

Recently in Taiwan, PGD has been used not only to avoid the birth of an affected child, but has the potential to be used for the selection of a human leukocyte antigen (HLA) match to an existing sibling. In July 2006, a Taiwanese couple sought help from National Taiwan University Hospital (NTUH), after not being able to find a suitable marrow donor for their child affected by fanconi anemia (FA).¹²⁰ This couple planed to undergo IVF and PGD process in order to tailor a baby to save their existing child.

FA is an autosomal recessive disorder that results in bone marrow failure in patients and leukemia in a significant proportion. Bone marrow transplant has been the only long-term cure for FA in present time. The success rate of bone marrow transplant when the donor is a perfectly matched sibling is as high as 85%, in contrast to the 40-50% success rate after the transplantation from an unrelated donor.¹²¹ With the progress in modern medicine, therapeutic cord blood transplantation is ready to be introduced as an alternative to bone marrow transplant.¹²² PGD will be an effective way to select a healthy embryo that is free of the FA and at the same time an HLA match for the affected sibling. This selected embryo will then be implanted into the mother’swomb to develop,and thisTaiwanesecouplewillhavetheopportunity to givebirth to a“designer

118 See Taiwan Foundation for Rare Disorders (both in English and in Chinese)http://www.tfrd.org.tw/cindex.php.

119 See Iris Young,

120 See Flora Wang, Hospital Looking to Create “Designer Baby”, Taipei Times, Tuesday, Jul. 04, 2006, page 2, see also http://www.taipeitimes.com/news/taiwan/archives/2006/7/4/2003317189.

121 See information about Fanconi anemia athttp://www.fanconi.org/aboutfa/FA.htm

122 Gluckman E, Broxmeyer HA, Auerbach AD, et al., Hematopoetic Reconstitution in a patient with fanconi anemia by means of umbilical cord blood from HLA-identical sibling, N. Engl. J. Med. 1989;321:1174-1178

baby”.

As mentioned earlier in this paper, the Artificial Reproduction Act has not been passed by Taiwanese Congress in the mean time. Even the earlier nullified Regulations of Prenatal Genetic Diagnosis and Supervision of Clinics has no mention of such application of PGD technique. Besides of the silence of legislation, no specific professional guidelines are in position to offer any references. Therefore National Taiwan University Hospital, although has all the required PGD technique ready for the couple, has stopped to consult the Department of Health on this matter, but has not been provided with explicit response since.¹²³

Thecreation ofa“designerbaby”ora“rescuebaby”hascomplex and even troubling ethical implications. The circumstances demonstrate the competing interests among three parties: the parents, the existing child, and the child-to-be. For the designer baby to be deemed ethically proper, there are some conditions to meet. First, the primary goal of the PGD has to create a child free of FA, and the child is cherished for his or her own uniqueness, not simply as a donor. Next, the physical burden for the child-to-be as a donor shall be minimized.

And finally, the HLA typing has to be done to address a life-threatening disease in the recipient child.¹²⁴ On the other hand, if the PGD was performed simply for HLA typing, concern would be raised that the child-to-be is used as a provider of cord blood, not for his or her own intrinsic worth. In a worst case scenario, the embryo may be implanted for the purpose of harvesting its organ or tissue. It is ethically impermissible for commodification of an embryo and thus the motivation of parents needs to be evaluated. In the Taiwanese case, the physical burden for the child-to-be will be minimized, with only the collection of cord blood. Furthermore, the PGD process is aimed to cure a life-threatening illness of the existing sibling, not for other none-medical traits such as double-folded eyelid, which is a popular trait in East Asia. However, the parent’s primary motivation is to save the sick child, not to add a healthy family member. This will increase the complexity of assessing this case. However, if the parents decided to wholeheartedly welcome the child into the family and treat him/her with loving care, the case should have a different outcome from those that later put the baby up for adoption after collecting cord blood.

6. Conclusion

Demand for PGD continues to grow due to the significant potential to give parents at risk of genetic diseases healthy offspring. The future development of PGD and its various uses will first depend on the refinement of blastomere biopsy and analysis, the accumulation of genetic knowledge, and the technique that provides rapid and accurate assessment of embryonic tissue.

Of equal importance would be the regulation of PGD. It is undeniable that the tension between freedom and responsibility is high, and it is crucial that this rapidly evolving technique be used in a responsible way. PGD should be allowed, provided that it is subject to supervision by a relevant authority, which should license, monitor and assess centers and practitioners of PGD to ensure it is employed within legal and ethical limits.

Although theobjection offuturechild’swelfareand thedangerofeugenicsdo notmeritatotalprohibition on PGD, legislation should be undertaken to prevent this technique from applications that become available to

123 See supra note 24.

124

only a select few and that are to denigrate people of disabilities.

To successfully regulate PGD, a public education campaign should be launched in order to raise public awareness of this technique and its uses, especially non-therapeutic ones. It is imperative to educate the public, including prospective parents, that genetic causation and susceptibility is not well understood. Furthermore, it isimportantforthepublicto know aboutdisabled people’slives,legislation and resourcesto supportthese people and their families. The goal would be to enable potential parents to make an informed decision whether to undergo PGD.

Non-therapeutic traits are a product of both genetic and environmental factors. It is worried that parents may unnecessarily and prejudicially terminate the life of an embryo with imperfect, but medically insignificant traits.

It should be noted that, however, most parents do hope the future child to have perfect gene in order to excel in thesociety.Despiteofparent’sanxiety when choosing to undergo PGD to maximizetheirchild’sadvantages,it is the social structure that makes certain genetic traits imperfect to be born. Given the relationship between society,parentsand theirchildren,thesociety’srolein shaping parentaldecision should beemphasized.Instead of blaming parents for being prejudiced against imperfect children, the society should face the discriminatory socialnormsembedded in itsstructure,and rectify itby enclosing peoplewith “imperfect”traitsto participate in this society, and by improving their living and educational conditions.