PGD: Present Areas of DebateEmbryo and the Law

The 2008 HFE Act states that PGD is only to be used for one or more of the following reasons:

(a) establishing whether the embryo has a gene, chromosome or mitochondrion abnormality that may affect its capacity to result in a live birth
(b) in a case where there is a particular risk that the embryo may have any gene, chromosome or mitochondrion abnormality, establishing whether it has that abnormality or any other gene, chromosome or mitochondrion abnormality.

PGD, in common with most other areas of reproductive medicine, is not without its critics; and the new HFE Act is no exception to this.

Firstly, it has been highlighted that whilst the Act stresses that the decision as to whether an embryo is at significant risk of having or developing a genetic abnormality rests with the supervising medical team and legislative authorities, it also states that:

The perception of the level of risk for those seeking treatment will also be an important factor.

Whilst this is a seemingly a positive affirmation of a basic human right, it has lead some to question whether giving such weight to the right to chose may in fact be troublesome with respect to defining limits to parental autonomy.

For instance, Dworkin defines procreative autonomy as a person‘s “right to control their own role in procreation unless the state has a compelling reason for denying them that control.“ Should we accept this definition as well as remaining committed to upholding the principle of autonomy then a person has a right to choice ’x’ unless a “compelling reason” is found to deny them that right. Many argue that this then leaves a person’s procreative autonomy as just another lifestyle or consumer choice.

Many fear that this would add to the risk of a “slippery slope” towards a future “designer babies” society in which parents have unlimited choice with regards to their child’s every feature from its sex through to their intelligence and attractiveness.

Such concerns were highlighted in the film Gattaca.

Whilst Gattaca may seem far fetched, the HFEA have been criticised for potentially permitting the ascension of just such a future over one of the new points of regulation found in the 2008 Act. The guidance in question states that:

Embryos that are known to have a gene, chromosome or mitochondrion abnormality involving a significant risk that a person with the abnormality will have or develop:
a. a serious physical or mental disability
b. a serious illness, or
c. any other serious medical condition, must not be preferred to those that are not known to have such an abnormality.

This clause has been met with widespread condemnation by its lack of a clear definition of “abnormality” and by implying that there is a reproductive ideal that should be adhered to. It has thus been seen as being discriminatory towards people with disabilities and as opening the door even further to a world of designer babies.

Opponents to this ruling stress that the classification of disorders as being “serious abnormalities” is very much based on our medical understanding at the time of consideration. For example, Type I (T1) diabetes was once classed as a fatal disease but is now managed relatively easily. Were it still fatal, embryos found to have T1 would have to be destroyed under the most recent legislation (Deech 2007).

The question of procreative beneficence has also fuelled concerns over this aspect of the Act.

Procreative beneficence can be described as a person’s responsibility to “select the child, of the possible children they could have, who is expected to have the best life, or at least as good a life as the others, based on relevant available information.” (Savalescu 2001)

Considering the new Act in this context, parents would not only be behaving in a non-beneficent were they not to choose the “strongest” embryo of those created, they would actually be behaving illegally by doing so.

Some have said that if this level of procreative beneficence were to continue, it could mean that in the future parents would be obliged to create a designer child at the expense of a ‘normal, healthy’ child as to not do so would be to act in a non-beneficent manner.

This debate has been further fuelled by several prominent cases involving the use of reproductive technologies by people deemed to have those conditions presently defined as “abnormalities” by the Act.

Case Study: Sharon Duchesneau and Candy McCullough

Sharon and Candy, both successful professionals, are a deaf lesbian couple. Having decided to try for a child using IVF, they decided that they wished their child to also be deaf. They therefore purposefully chose a congenitally deaf sperm donor. They subsequently had two deaf children but who were otherwise healthy.

Were the couple wrong to exercise their procreative autonomy and choose for their child to be deaf and, by doing so, did they behave in a non-beneficent manner by purposefully choosing to have children that society would deem to be at a disadvantage?

Sharon and Candy stood by their decision emphasising that they live in a lively deaf community which they wished to raise their children to be a part of. They were in, their view, providing their child with an ability to easily belong in that community. They also highlighted that had they been a heterosexual couple, their child would most likely have been born death anyway and they therefore, should not be condemned for having to having to make the choice that heterosexual couples would never have to.

Whilst the case did not involve the use of PGD it does emphasise the debate surrounding what should be deemed ’genetic weakness‘; as well as furthering the debate as to the level of autonomy prospective patients should be allowed to have.

Many have thus criticised the HFEA policy on PGD as being discriminatory towards such couples as Sharon and Candy:

Preventing deaf parents from using the technology in the way they fell best while allowing non-deaf people to do so discriminates against deaf people.(Bradshaw 2008)

Furthermore, it has been questioned whether individuals with so called “abnormalities” in a Gattaca-like future would not merely be discriminated against in terms of their reproduction but would actually be actively targeted in day-to-day life; or, worse still, be subjected to the kind of eugenic ideals witnessed in eugenic Nazi Germany.

There are of course those who contest the above points. Authors such as Wilkinson have argued that the level of importance that fertility and reproduction has in society means that the degree of respect that they demand would be carried across to people’s choices within the area. Therefore, in reality, procreative autonomy is unlikely to be viewed in the same context as basic autonomy.

Similarly, it has been stressed that simply because a technology becomes available, does not necessarily mean that it will be misused, especially since the moral dilemma that the technology generates will, in itself, be enough to often slow its advancement.

Whereas scientific knowledge doubles and triples every few years, applications of moral principles can take decades or centuries to develop, thereby creating a moral dilemma in the scientific quest for designer babies.(Miller, Kohm 1996)

Supporters of PGD have also stressed that whilst the use of PGD has increased, so has legislation to protect disabled people along with our understanding of conditions once considered a disability and empathy for those affected.