Ethical Questions

• What is positive eugenics?
  
   

  The dictionary says:
  "Eugenics refers to certain actions made in order to influence the human material in a favourable direction, either by preventing the spreading of hereditary defects (negative eugenics) or by encouraging the spreading of desirable hereditary characters (positive eugenics). Negative eugenics derives from the fact that a number of human diseases are hereditary; attempts are made to stop the spreading of these diseases, partly by preventing sick or healthy, recessive carriers of the disease from having children, and partly by advising against marriage between persons from families where a hereditary disease is recognised. In many countries, the national legislation contains regulation concerning eugenics, for instance in marriage and abortion legislation. Positive eugenics is described as encouraging marriages between people with specific desirable characters, but is normally said to be unethical. It was practised in Nazi Germany."
  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.

• 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.

• 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.
  

• 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 and only the donor´s travel expenses should be covered. But recipients generally feel that sufficient economic compensation to the donor should be provided to secure an adequate supply of donor semen. The donor is usually interested in as high a payment as possible. A questionnaire among our donors in 1992 and 2002 showed that nobody would continue without payment. Consequently "Fertility Tourism" and the "Grey Market" will arise if no adequate payment.
  Cryos pay a compensation fee to cover transport and inconvenience.

• How many pregnancies or babies are allowed per donor?
  
   

  The reason to limit the offspring number is to reduce the risk of inbreeding, which would result in an increased incidence of inherent diseases in the following generation. The knowledge that they have a large number of half-siblings may also be a psychological problem for some of the children and perhaps the donors too though these assumptions have not been investigated. The inbreeding risk criterion is not the total number of children born but the number of children created via DI per capita in each community. In cosmopolitan communities a higher number of offspring from the same donor is possible than in smaller communities. Legal limits differ greatly from for instance 5 in Australia (total population approx. 21,300,000) to 1 per 32,000 in the USA which gives 9241 children. However, inbreading is not the only problem. If the limit of offspring is set too low it will result in a price increase and/or a reduction in the availability of DI and consequently lead to "Fertility Tourism" and the "Grey Market".

  Cryos register each pregnancy and manage the pregnancy limits in two different quotas-systems:

  1. The "national quota" is the maximum number of pregnancies per donor based on any kind of regulation in the form of laws, circular letters, or collective agreements from organizations in the country in question (if such limitations are known to Cryos). Siblings are not included.
  
  2. Cryos' “worldwide quota" is a general limit of 1 pregnancy per 200,000 citizens in the patient's country. Siblings are not included.
  

  The national quota will only count if the country of the clinic and the patient's nationality are the same.  An increasing numbers of patients are treated abroad ("Fertility Tourism") and many countries do not have any limitations. Cryos manage this by the "worldwide quota". The worldwide quota warns if the maximum of 1 pregnancy per 200,000 citizens in the patient's country has been reached - independent where patient was treated. We consider it most likely that children will reproduce themselves in their mothers' country. It is therefore more important to register the pregnancy in relation to the citizenship of the patient rather than where the patient is treated.

  Example:
  If a Finnish woman is treated in Finland, her pregnancy will count in the national quota which is 5 pregnancies (plus siblings) per donor. Her pregnancy will also count in the worldwide quota. If she is treated in the UK her pregnancy will not have an influence on the Finnish and the UK national quotas. However, it will influence the worldwide quota (1 pregnancy per 200,000 citizens in the patient’s country) which in this case is 26 pregnancies plus siblings (Finnish citizens 5,223,442 : 200,000 = 26 pregnancies + siblings).

• 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.

   

• 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. 

   

   

• 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.
  

• What is your screening policy for semen donors?
  
   

  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 (viruses and bacteria).

• What is your policy on genetic screening?
  
   

  It is our policy to keep the risk for transmission of inherent diseases by donor insemination below the risk in the average population. If certain genetic screening is becoming standard before natural family planning in the society, it should also be a part of our screening procedure. We will not (and cannot) make a nil-risk.
  We follow this policy by making an anamnesis (medical history) for the donor covering the grandparents and any descentdants. Furhtermore we do karyotyping 46,XY. In case of any suspicions that cannot be ruled out through testing we will reject the donor. In case of any malformation of DI-children or by former recipient children we will do conditional genetic screening or reject the donor.
  If further genetically screening is required by any national standards or by legal regulation in countries where we deliver donor semen, we will perform such screening.
  The questions are discussed further under positive eugenics.
  

• What is your policy for screening of sexual transmitted diseases (viruses and bacteria)?
  
   

  As Cryos are operating internationally we screen donors according to the regulations in the user country. See under Screening.

   

• Do you screen for cytomegalovirus (CMV)?
  
   

  No. As the risk for transmission of virus to the fetus is extremely low, we consider in our policy for screening of sexual transmitted diseases this screening to be excessive.
  If screening for CMV should be done many other rare diseases should also be screened for. Besides approximately 50% of the general population has been infected with CMV and testing for CMV would therefore disqualify most of the positive donors because it is known that clinics are reluctant to order CMV-positive donors if they can order CMV-negative, because it is easier (and cheeaper) than to test the recipient female.
  However, when we supply donor semen to clinics in countries where CMV screening is a part of the standard (i.e. USA and UK) we assist by taking blood samples for the particular donors and send them for testing. We don´t want to know the results.