Monitoring of assisted reproduction techniques is inadequate, US experts sayBMJ 2003; 326 doi: https://doi.org/10.1136/bmj.326.7403.1352-c (Published 19 June 2003) Cite this as: BMJ 2003;326:1352
US doctors expressed concern last week that no system existed for monitoring children born through the use of assisted reproduction technologies, such as in vitro fertilisation, artificial insemination, interfallopian transfer, and intracytoplasmic sperm injection. They were also concerned about the lack of a system for ensuring that the embryonic and fetal genetic tests during such pregnancies were being done accurately.
“We do not have an effective system for monitoring the health, development, and outcomes of these children,” said Dr Kathy Hudson, director of the genetics and public policy centre at Johns Hopkins University. Dr Hudson was speaking at a meeting of the President's Council on Bioethics. The council was set up in November 2001 to advise the president on bioethical issues resulting from biomedical advances in science and technology. It is currently engaged in an examination of the various biotechnologies that touch on the beginnings of human life.
In addition to a failure to find out what happens to children conceived with assisted reproduction technologies, no system exists for ensuring that tests for genetic defects or other abnormalities are being performed accurately.
“There are now over 900 genetic tests available or in development. It is possible to do genetic testing at virtually every stage of the reproductive cycle, from the moment of fertilisation to the end of the pregnancy,” said Dr Hudson.
She pointed out that the results of these tests were often the sole clinical information on which parents or would-be parents made important decisions, such as attempting a pregnancy in the first place or continuing one: “These are profoundly important decisions, and there is a need to ensure that any genetic testing be accurate and reliable.”
On the need to find out what happens to children born by the use of assisted reproduction technologies, Dr Hudson noted that several studies have looked at the health outcomes of such pregnancies. These had provided some information about the health status of these children, but they varied in scope, design, and statistical power, said Dr Hudson. In an interview after the meeting she said that the Johns Hopkins centre had collected this literature and had formed a panel-the assisted reproduction technologies children's health panel-to evaluate the studies that have been done, the data they had produced, and their conclusions.
“From this we will try to ascertain where firm conclusions can be drawn about the risks or their absence and where there are uncertainties, and if so, what types of studies are needed to address them. We need to know what we don't know and move to collect that information.”
In her presentation to the council, Dr Hudson called for public participation in the development of public policy on genetic testing.
She noted that in Canada and the United Kingdom extensive public discussion had taken place about assisted reproductive technologies. Such discussions had resulted in the setting up of the Human Embryology and Fertilisation Authority in the United Kingdom, and consideration was being given to setting up a similar body in Canada.
In contrast, in the United States, although there has been a great deal of publicity about reproductive technologies “the public has not had an opportunity to get involved in the debate.”
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