If society, and indeed a child’s parents, have a duty to provide that child with adequate opportunities for achievement,vi then they are surely guilty by negative responsibilityvii if they fail to prevent a disability which will certainly impact on that child’s opportunities. It is analogous to failing to send your child to school and thus rendering them illiterate through your inaction. Critics would argue that it is not the disability which is the barrier to justice, rather society’s attitude to disabled people; you do not blame black people for their colour when they suffer discrimination.
However I would counter that it is simply prejudiced bigotry, as there is no logical argument which can sustain the notion that someone’s skin pigment should act as a barrier to their claims to equal opportunity. The same cannot be said for people with a disability, as this can and does affect their opportunities; a blind person will never be able to drive or enjoy a painting. We must not think this is reason not to try and accommodate them as far as possible, but we must accept that they are at a disadvantage.
It has also been argued by Dr. Tom Shakespeare that there are a lot more pressing problems in society that lead to inequality of opportunity such as lack of social class mobility. He suggests that resources should be diverted to such problems to achieve a far more widespread widening of opportunities than PGD for disability. It is certainly true that there are other issues of inequality in the world which affect more people than disability. However that does not change the core moral principle that it is right to give people the best chances in life, it is merely an argument about the allocation of resources. Therefore, for reasons of social justice I feel that it is right to do as much as we can to prevent people having disabilities.
The second major point in this debate is that of the obligations of the medical profession in such cases. Glannonviii states that medical practice is grounded in the principles of nonmalefience (not harming), Benefience (bringing benefit), Autonomy (individual self determination), and Justice (the right to fair and equal treatment). Let us consider these in turn. For a doctor to adhere to the principles of nonmalefience, they are obligated to act in such a way as to actively avoid harming their patients. Again this is an uncontroversial statement: nobody expects a doctor to be justified in harming someone. However an embryo is not ‘someone’ as it has no concept of itself; it cannot value its own existence.
This theory, proposed by Harris and termed ‘personhood’ix stipulates that an embryo is merely a potential person, in the same way that a sperm cell is half a potential person. If a doctor chooses not to implant an embryo which has a risk of disability, then they do not harm any person, and so do not fall foul of nonmalefience. If their actions lead to the birth of a disabled child, then they can be considered guilty of impersonal harm.
This is the concept that even if no identifiable people are worse off than they could have been, harm can still be donex , which is a contravention of medical ethics. To illustrate this, imagine a nuclear reactor exploding through negligent maintenance, and as a result of the radioactive fallout, mothers gave birth to deformed children (conceived after accident). Those children did not exist when the reactor exploded, but the people who caused the explosion are still responsible for the children’s deformities.
The next key point is that of beneficence. A doctor is obligated to offer to do good where possible within their sphere of medical influence. By preventing the birth of a child who will most likely have a disability, the doctor has done a good thing by that child for reasons of social justice and the benefits to the child’s quality of life. Critics of PGD support the treatment or cure of an individual with a disability, but draw a distinction between this and the active prevention of a disabled human being born. They argue that preventing the life of a human can hardly be deemed beneficial to that human, and that by picking one embryo over another, one able bodied life has been valued as more worthwhile than a life with a disability.
This question strikes at the core of medicine. Nearly everybody deems a state of health to be preferable to one of illness. Doctors treat patients with the view to making them healthier than they are, but it does not follow that the patient has less value placed on their life because of this desire to improve their position. An embryo is not a life that can be valued – it is a holding vessel for genetic code which lays the foundations for the life that is created from it. It is this life which you do or do not benefit, not the embryo. Therefore for reasons of beneficence to the life of the person concerned PGD is justified.
Autonomy and the deontological principles surrounding it are complex when dealing with PGD. The embryo has no decision making power, meaning someone must decide what is in the best interests of the resulting child. This is less of a question of whether PGD is right or wrong and more of who has the right to decide. The HFEA 1990 states that the doctor may pick a suitable embryo, and leaves it to the Human Fertilisation And Embryology Authority to decide what suitable means. Can suitable ever be disabled when an active choice is exercised? However if parents would like to have a disabled child, or decline to allow a preference to be expressed, does this override the doctor? A doctor would be contravening the principles outlined above if they allowed a disabled child to be born when they could have prevented it. What then, of autonomy?
A parent is already permitted to raise their child in a way which they see fit, and the law has established respect for the autonomy and privacy of family life. However the law also protects families from doing harm (it is not permissible to sexually abuse your children). Therefore, the augment that a parent has control of their child’s autonomy is true up to the point where their actions will cause harm. Therefore, it is the duty of the doctor to provide PGD despite the wishes of the parents as the parent cannot do harm through action or conscious inaction. The 1989 Children’s act says that parents have the power and duty to consent to beneficial treatment only. Examples of how this principle is already in effect can be seen in the provision of lifesaving blood transfusions to children of Jehovah’s Witnesses despite their opposition