Badania PGD, cały teks w jezyku angielskim
The law regulation about aided procreation in Poland proposed by deputy Gowin, arouses a lot of controversies and will probably become a start for many ethical and law discussions.
Not many people, no matter if they are pro or against using this medical procedure to cure infertility, deny the need to determine the rules of dealing with reproductive cells and foetal and embryonic tissues when taking into account the number of children who were born with the help of methods of aided procreation.
But the determination of these rules requires discussion about many ethical problems that result from in vitro procedure being used now, like for example problems with criteria to access to the programme, with usage of gamete donation, with practising pre-implantation diagnostics, with limited number of moved embryos and freezing ‘additional’ embryos.
My main goal is to point the ethical problems regarding only one of the aspects of aided procreation, which is PGD.
However, before I will get to the essence of the matter, we need to indicate two objections. First of all, the intensity of information about moral matters of the current medicine in context of the beginnings of the human life is huge and has a lot of threads connected with each other. It is enough to mention that the area of possible questions applies to such fundamental and ethical issues as the way of interpreting the significance of human life, the right to live and human dignity, moral status of impregnated egg cell and conditions of doing medical experiments on human being. In the context of aided procreation and the acknowledging the infertility as a social disease, important is a debate about the definition of health and moral right of human being, especially the right to make conscious procreation decisions, the exploitation of medical prospects in order to safe human health, equal access to medical treatment and to all information about the health which could have influence on the decisions made by a patient. Second of all, the problem of pre-implantation diagnostics is hard to isolate from bigger ethical questions, connected with the possibility of practical usage of achievements of genetic medicine, especially in the area of prevention of diseases that are genetically determined. I have in mind the issue of morally allowable methods of prevention of coming to the world people that have defective genetic ‘equipment’, right methods of conducting the genetic counselling, the conditions of using the prenatal diagnostics, pre-symptomatic and genetic tests, and genetic therapy. Present and future possibilities of genetic medicine give us the possibility of ethical discussions about eugenics, genetic discrimination, and moral responsibility for the health of not only existing but also for future and potential people. They (present and future possibilities of genetic medicine) also provoke us to ask the question about the way in which we can use available knowledge and try not to loose from sight the goal of medicine and values important for our culture.
Pre-implantation genetic diagnostics allows detecting genetic flaws of the embryo before its moving to the uterus. At the beginning, the research concerned genetic diseases just connected with sex and was limited to determine the sex of the embryo. In 1991 in Great Britain was made first pre-implantation examination in order to eliminate mucoviscidosis, the disease which is determined by the defect of single gene. In 1992 was born healthy baby girl.
At this moment, PGD allows to diagnose big amount of genetic diseases in very early stage, before the pregnancy. It is routinely applied in the USA, Sweden, Denmark, France, Italy, Spain, Czech Republic and Turkey, and is considered to be a standard medical technique. PGD increases chances in success of in vitro procedure amongst the couples being treated for infertility and gives chances to have a healthy child for couples that have bigger risk of passing on the genetic flaw to their offspring. In Poland, the pre-implantation diagnostics has been used since 2005 but only in some clinics. It allows detecting, among other things, mucoviscidosis, Huntington’s disease or spinal muscular atrophy. Pre-implantation diagnostics can be performed using two methods: by the examination of genetic material of the mother or by the examination of genetic material of the embryo. None of these methods affect development of the embryo and have no risk of damaging the embryo. Recommendation to apply PGD is genetic history, the diagnosis of being a carrier of genetic diseases, the age of mother 37 and more, miscarriage and unsuccessful attempts of in vitro fertilization.
The problem of regulating the laws of pre-implantation diagnostics can be considered differently. The first scenario if we are approaching the topic from practical side which means regulation bioethics and the second case when we are approaching the topic from philosophical side – theoretical bioethics. Regulation bioethics aims at such law solution which will harmonize with existing medical law, especially that one which concerns the prenatal diagnostics, recordings of doctor’s ethical codex, and takes into account the effectiveness of in vitro procedure and medical standards. Theoretical bioethics is not connected with already accepted law solutions concerning prenatal diagnostics, it is not connected with medical practice either. It canvasses philosophical and ethical debate and is looking for an answer which would find the support in certain vision of human being, in certain system of values and would be advocated with appropriate ethical argumentation. Instead of asking the question which regulations bioethics ask: ‘what kind of laws that will regulate the use of in vitro procedure we should accept in order to increase the chances of infertile couples of having a healthy baby and to reduce the use of this procedure for unacceptable goals, remaining in the same time in agreement with obligatory rules of medical ethics and human rights. Theoretical bioethics ask if the in vitro method is morally allowable way of treating infertility, if it is permitted to accept the pre-implantation and prenatal selection, if it is possible to accommodate it with idea of respect for human life, interpersonal solidarity, justice and prohibition of discrimination.
The first point of view is usually defined, not without maliciousness, as ‘procedural’, even though it results from accepted philosophical assumptions. The second point of view is accused of being religious one, even though recognising morally and philosophically important problems connected with the use of PGD as a method to prevent from coming into world children that are incurable, is not necessarily connected with acceptance of specific religious assumptions.
Pre-implantation examination in the law project
In the law project about the prevention of human genome and in changes of other laws from 10th of December 2008, it is assumed that the pro-creational aided procedure involves ‘diagnostic and therapeutical activities that are connected with the correct development of human embryo that has been implanted’ (art.14, ust.3). But the genetic examinations of the embryo are ‘allowable only for therapeutical purposes that into consideration take the good of the baby’ (art.11), there can be created only one or two embryos ‘providing that they will be implanted simultaneously into the mother’ (art.21, ust.1) and ‘it is forbidden to destroy the human embryo’ (art.6). From preamble of the law project and attached justification we read that by ‘the good of the baby’ we should understand protection of innate, inalienable and infrangible human dignity and necessary condition for preventing the human dignity is the prevention of human life on every stage of his development. There is no doubt that the law project forbids the usage of PGD in selection the embryos. It does not mean that there is absolute prohibition of pre-implantation diagnostics. Any information about genetic condition of the embryo does not justify the resignation from transfer. So, we can deduce that presented law project imposes the duty on doctor to not only prevent the life of embryo but also to implant the embryo without regard for its chances to live and with no regard for the fact that it can have serious and incurable genetic flaws that can be the cause of miscarriage or even death.
It is not clear if woman can refuse the aided pro-creational procedure on grounds of genetic flaws of the embryo. On the one hand, we read in the project that procedures of the aided procreation are not conducted when there are ‘medical contraindications to transfer the embryos’ (art.18, ust.2). on the other hand, the law project permits to freeze the embryo in three cases, ‘when there are medical contraindications to transfer the embryo or when woman withdraws the permission or when there are other grounds and the transfer of the embryos cannot be done’ (art.22, ust.1). The embryo that had been cryopreserved can be used in the next medical procedure by the mother and can be given to prenatal adoption. The Judge can agree to transfer the embryo to another woman if the mother withdraws her permission or when it is after 2 year of embryo’s creation, ‘unless the genetic mother who had not withdrawn her permission to transfer, made provision in Central Biomedical Registry for extension of this time to 3 years’ (art.24, ust.1).
The authors of the law project had in mind that the prohibition of the usage of PGD in in vitro procedure can lead not only to increase of miscarriages and decrease of effectiveness of this method in treating infertility, but also to increase of frequency of children being born with serious genetic flaws. The first above-mentioned consequence is the reason to accuse the law project of the fact that under a veil of law regulations of in vitro procedure, this makes impossible its effective usage.
But looking at the title of the law project and analysing attached justification we can clearly see that basic goal of this project is taking under the law protection human embryo. Then, there is fully justified conclusion that the acceptance of the solutions approved in this law will help to intensify the law obligatory now about family planning, protection of human embryo and conditions that abortion can be done in. Awareness of the second above-mentioned consequence has found direct reflection in the law project and resulted in takeover of three detailed law solutions. Firstly, the prohibition to use the aided procreation procedure by people with genetic diseases or genetics flaws because they could with high possibility pass the flaws on to their offspring (art.16, ust.2, pkt 1). Secondly, the statement that the genetic characteristics of the embryo ‘cannot justify the responsibility for compensation’ (srt.30, ust.3). And thirdly, the increase of the amount of pension for handicapped child from 500PLN in 2010, to 750PLN in 2011 and finally to 1000PLN in 2012. The law project is not précised when it comes to the time of keeping the frozen embryos and gives no answer for question: what kinds of faith frozen embryos have with genetic flaws that were not implanted.
Argumentation against the prohibition of pre-implantation diagnostics
Basic assumptions of the law project mentioned above about the problem of pre-implantation diagnostics awake some objections of ethical and law nature that are mentioned especially by supporters of liberal way of dealing with aided pro-creational procedure. According to this attitude, infertility is social disease and should be treated, patients have the right to benefit from achievement of medicine, which means also from methods of aided pro-creation, and patients have the right to all available information about their future child’s health, which means also to PGD, and patients have the right to freedom of making the decision about implantation. And in that way, 5 members of the team created by Gowin in attached report number 20 say that ‘conducting medically justified pre-implantation diagnostics should be allowed and can lead to resignation from implanting some embryos’. This statement is based on the belief that human life is a value but not the highest and only value, and in the situation of conflict between bigger and smaller evil we should choose smaller one. The difference between descriptive definition of human and prescriptive definition of a person gives us the basis to think that ‘destroying the life of embryo in an early stage of its development is smaller evil that destroying the life of the same embryo before or after it is born’.
The basic objections against the prohibition of pre-implantation diagnostics can be come down three matters. Firstly, the prohibition of using PGD influenced the introduction the prohibition of using in vitro procedure by couples that can pass genetic flaws on to their offspring. This recording intrudes the right for every couple to use medical procedure, discriminates people with genetic flaws and carriers of recessive, only potentially dangerous genes. Particular paradox is that the justification of limited access to aided procreation and PGD for that people that would give them a chance to have a healthy child is prohibition of genetic discrimination. It gives us basis to conclude that the discrimination of genetically flowed embryos is bigger evil morally than discrimination of adults.
Secondly, the prohibition of using PGD decreases chances of woman to get pregnant, endanger her to the risk of miscarriage and the risk of sadness after the loos of the child because of genetic flaws and causes the necessity for another procedure of aided pro-creation that could be avoided. It influences the decrease of effectiveness of treatment, causes increase of psychological and physical damaged for the patient and increases expenses and time of the treatment.
Thirdly, the prohibition of using pre-implantation diagnostics and embryo selection, while permitting prenatal diagnostics at the same time, leads to paradoxical conclusion that destroying the embryo in vitro is bigger evil than abortion. Solutions about prenatal diagnostics obligatory in Poland give women who are at better risk of having a child with genetic, incurable flaws, the right to have prenatal examinations and making a decision to have or abort their child. These kinds of examinations do also women who got pregnant as a result of aided pro-creation procedure. Admissibility to abort a child which is developing already in mother because of incurable and genetic flaws, which means destroying the life of embryo, can be interpreted as law justification for resignation from transferring the embryo having the same flaws which outside the mother has no chance to survive. We can point to very important moral difference between those two actions: destroying the life of an embryo which has big chances to be born (conscious depriving of life) and not allowing to transfer the embryo which can be interpreted as withholding from action (consent for death). It is worthy also adding that one of the arguments pro PGD is acknowledgement that embryo selection allows woman to avoid psychological, physical and moral problems connected with abortion of a child after prenatal diagnosis.
Pursuant to attitude mentioned above, there should be a permission to conclude pre-implantation genetic diagnostics if it is medically justified. What stays to explain is how the conditions that will qualify to PGD should be determined and what we understand under ‘medically justified’.
There is no discussion about those two matters both in the report of Gowin’s team and in attachments.
In discussions being had in Poland on this matter, there is taking into consideration only one kind of PGD, which is screening out, which means that we are using pre-implantation diagnostics to loom the embryos that have no particular genetic flaw and implanting only those that are healthy. Ignored is the fact that we have the second possibility of using PGD, which is screening in, which means that we are using pre-implantation diagnostics to look for the embryo which would qualify, for example which would have cell compatibility. Smaller interest of this matter is probably because of two facts. Firstly, these kinds of examinations are not (yet) being done in Poland. Secondly, examples of using PGD to choose the embryo which will be best donor for a sick brother or sister provoke controversies and demand ethical discussion which will reach outside the main goal of aided procreation accepted in medical world – which is the use of accessible medical techniques to treat and cure infertility. But if the law regulation of the rules of dealing with reproductive cells and foetal and embryonic tissue allowed conducting pre-implantation diagnostics, it should regulate both kinds of PGD. Proposed by some members of the team liberal solution assumes using pre-implantation diagnostics without justification. Is it about screening out or screening in? it is too general. However, we can establish that creating custom embryo in order to save life of already existing child is not fulfilling criteria of medical justification and should be regulated differently.
According to the opinion of CDBI, rules that qualify to PGD can be established in different ways, for example via creating the list of specific diseases, the use of criteria ‘serious incurable genetic diseases’ without listing them and investigating every case separately. First proposition needs constant updates; the second one needs précising the way of understanding used definitions; the third one, least precise, can lead to very subjective interpretations.
PGD procedure is treated as indispensable element of genetic counselling, which is considered to be the most important pillar of prevention of coming to the world children that have serious genetic flaws. It does not change the fact that eliminating genetic diseases through embryo selection or abortion after prenatal examinations is leading to ethical controversies resulting from the question about moral status of an embryo. One of the biggest problems is a question if pre-implantation and prenatal diagnostics will not contribute to discrimination of the handicapped and what influence can it have on shaping the moral responsibility for the quality of genetic material of future people.