pp. 435-436 in
Bioethics in Asia
Editors: Norio Fujiki and Darryl R. J. Macer, Ph.D.
Eubios Ethics Institute
Copyright 2000, Eubios Ethics Institute
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F28. Maternal Serum Marker Screening & Japan Down Syndrome Association Workgroup for Bioethical Issues
I am chairman of the Japanese Down Syndrome Association. Today I am speaking in answer to a request to introduce the approach of our group to maternal serum marker tests.
The Japanese Down Syndrome Association was founded in June 1995. It is an organization inaugurated as a union of parents groups active at that time in various areas nationwide which had accepted the call of two groups, the "baby dove foundation", which already had corporate authorization as a national organization, and the "baby goat group" which had members nationwide and was carrying out essentially nationwide activities. At present we have 42 branch and subbranch offices and over 4100 members. This is though to represent about 10% of the total number of Down Syndrome children in Japan. Moreover the 42 branch and sub-branch offices make-up about half of the parents groups for Down Syndrome nationwide which at present can be confirmed as active.
Maternal serum marker tests have been an issue of the greatest concern to parents groups related to Down Syndrome ever since the founding of the Japanese Down's Syndrome Association. Our Association understands maternal serum marker tests as an examination whose principal target is Down Syndrome.
We judge that the spread in practical use of maternal serum marker tests is proceeding at a much more rapid pace than we at first anticipated. Ever since its founding the Association has tackled education and exchange of views concerning the test as one of its most important tasks. Spread of knowledge about the test through the association bulletin, introduction of members and experts opinions and other such educational activities aimed at members have been our central concrete activities. Also through the voluntary efforts of the members we have organized a sub-group for study of bioethics and worked to gather and collate information concerning the whole of prenatal diagnosis. Moreover we have sent questionnaires to the various clinical testing companies at present actually carrying out the examination concerning the conditions under which it is performed, their approach to achieving complete implementation of informed consent, post-testing follow-up etc., and presented all the replies in the association bulletin.
From this fiscal year the approach of the association has become more aggressive. One factor in this has been that presentation of the maternal serum marker test through the mass media etc. has proceeded, and along with this debate within society on the pros and cons of the test has become animated. But a greater reason is the increase in consultations from members who were advised to undergo testing during pregnancy, or who on testing were given a positive result. Many of the consultations came in a state of great psychological and emotional confusion. Given then this state of affairs the need to clarify the stance of the Japanese Down Syndrome Association towards this test became pressing. Against this background the Association submitted to the Ministry of Welfare a manifesto dated the 7th of April calling for caution in the spread of practical use of the maternal serum marker test. In this statement the Association expressed the following perceptions.
Firstly, this test is publicized of first sight as convenient and safe and hence cannot help but be taken as one of the techniques for broad screening. If, although from the results of investigation of clinical testing companies data indicates that positive test results lead to abortion, even so this test comes to be used in screening, we may conclude this will bring about a denial of recognition to Downs' patients.
Secondly, the setting of the present diffusion of the test has at its roots a negative image of the handicapped and tacitly exploits the prejudice that "I wouldnft want to raise a handicapped child", and that this is not just a problem for Downs' parents and their families, but is also a danger signal for the present state of protection of human rights itself in Japan.
Based on these perceptions the Association demanded of the Ministry of Health and Welfare the preparation of appropriate guidelines and the inclusion of interested groups in that process.
The clinical testing companies claim to carry out sufficient informed consent for the test. However, the Association has received reports of incredibly slovenly practices from various areas. There was even one case in which leaflets stating "Down Syndrome or no? Find out safely and simply "had been left in the hospital , and after having the test five pregnant women testing positive had their names and results read out in the middle of other testees. The lady who reported this example to us appealed to the association since that day I have not caught sight once in the obstetrics and gynecology consulting rooms of the other four people called out along with me. I am worried sick. In the case of report of such a situation after sufficient consultation with the reporter, the Association sends a letter to the medical organization involved and the testing company responsible for results requesting information of the circumstances and that improvements be made.
Unfortunately at present we can see no more on the part of the clinical testing companies or the doctors association. Some time ago we had the opportunity to discuss the contents of the translation of the proposed WHO guidelines on genetic diagnosis at the Association board meeting. In those guidelines arguing that prenatal diagnosis will not promote thinking on elimination of the handicapped. On the premise that "However, impossible it may be, even if all the handicapped fetuses that could be found by genetic diagnosis were to be aborted, a society without the handicapped would not be achieved" the guidelines go on to argue that "so even if prenatal diagnosis spreads the efforts to enrich social resources for the support of the handicapped must be continued, and hence prenatal diagnosis will not promote thinking in elimination of the handicapped". We feel real fear at the ideology of selection thinking within this logic.
The Japanese Down Syndrome Association is nothing but a union of groups the people concerned and of parents and in debate on prenatal diagnosis, a cutting-edge medical technology, can only speak as "amateurs". But for that very reason we intend to continue to demand open access to information on this issue, and opportunities for exchange of opinion. Moreover, seeing that this issue is no longer at the level of a simple scientific debate, but has become a social issue actually threatening the way of life and repose of individuals, we intend to continue our activities calling for a wide public debate of the issues.
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