Ethical Questions
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What is positive eugenics?
"Eugenics (Greek): genetic hygiene; measures made to influence the human material in a favourable direction, either by preventing that hereditary defects are spread (negative eugenics) or by encouraging the spread of desirable hereditary characteristics (positive eugenics). Negative eugenics derives from the fact that a number of human diseases are hereditary; attempts are made to stop the spread of these diseases partly by preventing sick and possibly healthy carriers of the recessive disease from having children and partly by discouraging marriage between people from families where the hereditary disease has been diagnosed. Danish legislation contains certain eugenic provisions e.g. in the Marriage Law and the law relating to termination of pregnancy. Positive eugenics encompasses encouragement of marriages between people with specific desirable characteristics but this is normally said to be unethical. It was practiced in Nazi Germany." Source: Lademanns Leksikon 1981 "Eugenics: the study of or belief in the possibility of improving the qualities of the human species or a human population, esp. by such means as discouraging reproduction by persons having genetic defects or presumed to have inheritable undesirable traits (negative eugenics) or encouraging reproduction by persons presumed to have inheritable desirable traits (positive eugenics)." Source: http://dictionary.reference.com/browse/eugenics Today, it is possible to screen for hundreds of genetic diseases, and in the future many more screening procedures will be possible. However, if further genetic screening on donors is carried out, it will be difficult to assess when or where to stop. Recipients tend to demand as much genetic screening as possible. Even though this need seems be of a negative eugenic nature, it may turn into a degree of positive eugenics, unless we are talking of conditional screening. Conditional screening means that the donor or the female recipient is known to have or suspected of having some kind of genetic disease. However, it is important to look at the differences in the character of positive eugenics and in this connection observe whether it is practised individually by the parents of their own free will or whether it is dictated by or systematically influenced by the community on an ideological basis. For all species natural reproduction is very much a question of creating the fittest, as illustrated by Charles Darwin, where evolution is a result of environment and natural mutation, but certainly also influenced by more or less complex selection mechanisms by the individuals.
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Are the donors anonymous?
According to Danish legislation doctors are only allowed to treat with semen from anonymous donors. However, non-doctors, such as midwifes are alloved to treat with non-anonymous donors and export of semen from non-anonymous donors are allowed. The identity of both anonymous and non-anonymous donors are registered by Cryos. Recipient and childrens ID or pregnancy information is never passed on to our donors. Any recipient identity registered (Reservation of donor semen) will be kept strictly confidential.
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Should the child have the right to know the identity of the donor?
Since the early 1950s and escalating until today there has been an international discussion of whether or not to have donor anonymity.
The reason for this discussion is that it is possible that children who learn about their DI-origin will suffer from identity problems and a feeling of being betrayed if they are not able to find their genetic father and if the truth is kept secret. Some say that DI-children should be given this right, which is a right that adopted children already have. Others claim that this is a right according to The United Nations Convention on the Rights of the Child (UNCC).
It is easy to understand these arguments, but unfortunately it is not so easy to realize in practise (as showed below). If we look deeper into the question it may also be less important to secure DI-children this right:
· DI-children have their mother as a genetic parent, which makes the situation regarding their identity different from that of adopted children. DI-children are fundamentally highly wanted while adopted children start their lives as unwanted or unplanned, which makes the two situations quite different.
· The UNCC, Art 7.: "The child shall have … the right to know … his or her parents." But the term "parents" has never been conclusively defined. The parents could be the social parents, the adoptive parents, the foster parents, two females, etc. Initially, the article was suggested by the delegation of Egypt as "The child ... belongs to his parents", and The Legislative History of the UN Children Convention also shows that it was meant to prevent situations like "Lebensborn" in Nazi Germany, kidnapping of children as seen in for instance Chile and Argentina. DI was never mentioned. So the question is still: Who are the parents? Is it always the genetic father and mother? What is best for the child’s welfare?
· A significant number of children are not genetically related to their social father. This number reaches 5-8% in Denmark (M. Mikkelsen 1992). In Britain, an examination of blood samples taken from school children and their parents, followed by a comparison of the blood types, showed that 1/3 of the children could not be related to their father (H.C.Rosenkvist, 1979). As early as 500 B.C., the Romans introduced the "Pater est" principle, implying that "the man who is married to the woman is the father of the child". It has always been a problem to determine paternity. This is also the reason why the term “parents” as laid down by the UNCC cannot apply solely to the genetic parents.
· Many surveys show that the recipients (especially the social fathers) do not want the child to have the opportunity of finding the genetic father (Snowden et al., 1993, Amuzu et al. 1999, Golombok et al. 1995 etc.). Recipients prefer anonymous donors. These surveys also show that few of the DI-children (0-14%) are actually told about their DI-origin, and this is mainly important to lesbian couples and singles where there is no obvious father.
· We do not know much about how DI-children feel and think. There is very little litterature about this issue. One is from “The Australian Donor Conception Support Group” who have published a book "Let the offspring speak". It is interesting to read the testimonies from adult DI-children, who are usually of the opinion that anonymous DI should be forbidden. Many of the people describe traumatic lives with communication difficulties and problems of interpersonal relations with their (social) father. Later in life when they are told about their DI-origin, most of them are suddenly able to see why they have had such a traumatic life, and they now have an explanation to their problems, which are due to the “false” father etc. However, there is nothing special about this problem that might just as well be characteristic of other individuals. Other people can also have a traumatic life with communication difficulties and problems with interpersonal relations with their father. The only difference is that other people do not have this “explanation” (scapegoat) to their problems. Moreover, these DI-children, who plead injustice to their person, would not have existed at all had it not been for the anonymous donor. Their demand is thus self-contradictory. The alternative is not to exist. Anyone can have problems concerning not being born under optimum circumstances and with ideal parents. Nothing can be done about this. Many of the DI-offspring also express their problems with their life-lie (truth has been kept from them). At the other end of the scale with DI-offspring who have not experienced trauma or problems with their origins or (social) father, nor - indeed - with anonymity, only a few cases are known. Some of them do not even express curiosity about the donor. But the voice of the discontented few carries much more weight as it is regarded as being representative of all DI-children. Who represents the great, happy, (uninformed), silent majority?
Finally, the dilemma is that it is not possible to hire enough non-anonymous semen donors to cover the demand. A questionnaire among our donors in 1992 and 2002 illustrates this as 22% of the donors in 1992 and 12% in 2002 would continue if anonymity were not secured. Lower selection criteria or a higher payment to the donors could maybe compensate for this problem, but then we would move into other kinds of ethical problems.
In Sweden non-anonymity has been a reality since 1985 resulting in a reduction of approx. 85% in the former donor corps and a similar reduction in the number of new DI-children. The Swedes now resort to "Fertility Tourism" and the "Grey Market" and are forced to go abroad (mainly to Denmark).
For many years, more DI-pregnancies have been reported on Swedish patients treated in Denmark than on Swedish patients treated in Sweden.
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Should semen donors be paid?
From society’s point of view it is usually considered unethical to pay for donated human tissue. Donation should be mainly altruistic. However, it is also important to secure an adequate supply of donor semen. Without sufficient economic compensation consequently "Fertility Tourism" and the "Grey Market" (see below) will arise. According to the EU-tissue directive it is accepted to compensate the donor's travel and inconvenience. A survey among our donors in 1992 and 2002 showed that nobody would continue without payment. However, we experienced in 2004 when we increased the compensation from DKK 250 to 500 in order to attract more donors, that we did not got more donors and that the active donors did not donate more often. After one year we reduced the compensation to DKK 250 again - and nothing happened. We therefore belive believe that the donors are actually donating altruistic, but they will not do it without a little compensation for their effort. Cryos pays a compensation fee to cover transport and inconvenience.
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What is "Fertility Tourism"?
Fertility Tourism is when patients travel abroad to find available treatment not offered in their own country. Fertility Tourism in relation to donor semen is mainly caused by decreasing domestic supply. This is particular the case in countries where anonymous donors are banned (i.e. Sweden, Austria, Switzerland, The Netherlands, Norway, UK, Finland and Australia). Other important reasons to diministh the supply is insufficient compensation, taxation of the compensation, very extensive screening programs that will exclude a high percentage of donor candidates, restrictions that the donor must be proven fathers before comencing a donor, a low limitation of numbers of pregnancies or offspring per donor. Restrictions are normally made in order to protect the child's interest or in order to meet other ethical or political goals. However, it seems that it is very complicated to attract semen donors even without restrictions, so any kind of restrictions will reduce the supply of donor semen. This is a true dilemma - but most often not taken care of by the responsible politicians.
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What is the "Grey Market"?
The Grey Market is made up of (unauthorized) sperm banks or private persons offering their services at a lower or non-existent level of screening, with the risk of Sexually Transmitted Diseases (STDs) and possible legal complications. The Grey Market appears mainly by decreasing domestic supply. This is particular the case in countries where anonymous donors are banned (i.e. Sweden, Austria, Switzerland, The Netherlands, Norway, UK, Finland and Australia). Other important reasons to diministh the supply is insufficient compensation, taxation of the compensation, very extensive screening programs that will exclude a high percentage of donor candidates, restrictions that the donor must be proven fathers before comencing a donor, a low limitation of numbers of pregnancies or offspring per donor. Restrictions are normally made in order to protect the child's interest or in order to meet other ethical or political goals. However, it seems that it is very complicated to attract semen donors even without restrictions, so any kind of restrictions will reduce the supply of donor semen. This is a true dilemma - but most often not taken care of by the responsible politicians.
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Should single women and lesbians have access to DI-treatment?
For social, moral, and religious reasons this question cannot be addressed in a general manner. However, there is no scientific indication that children are suffering by being raised by single women or lesbians. On the contrary. One thing is certain though: If single women and lesbian couples do not have access to legal DI-treatment they will find other solutions and "Fertility Tourism" and the "Grey Market" will appear.
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Conditional screening
Screening means "testing for diseases which existence is not known beforehand". We divide our screening policy into genetic screening and screening for sexual transmitted diseases (STD's) (viruses and bacteria). Screening for STD's does not really involve ethical problems, however, genetic screening does. Genetic screening - if it is unconditional screening - will very easily lead us into positive eugenic (above).
Conditional genetic screening of donors are done in case the recipient is a know carrier for a specific genetic disease and where the child will have a risk to inherent the disease if the donor is a carrier of the same genetic disease. Such tests is called conditional screening. Cryos can do conditional screening if a recipient apply for such screenings. However, conditional screening beyond the relevant Standard will only be offered for non-active donors with a low stock.
It is Cryo's policy to only do (unconditional) screening if the donor belongs to a race or is from an ethnic group where the risk of him being a carrier of certain hereditary diseases is >1:5000 the donor is tested to establish if he is a carrier. This applies for all donations received after 1 September 2010. Before that date the donors were only testet for these diseases if the doctor found it necessary or if it was required according to one of the Standards.
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