-Kazuso Iinuma, M.D.,
Clinical Dysmorphology Laboratory, National Children's Medical Research Center, 3-35-31 Taishido, Setagayaku, Tokyo 154, JAPAN.
Everybody who thinks about bioethics needs to remember the difference between thinking and doing. In the last Eubios Ethics Institute Newsletter 3: 72-6, your findings on the opinion surveys of the acceptance of genetic screening and gene therapy were published. Regarding abortion of a handicapped fetus it reports that only 12% in Japan disagree with abortion of a handicapped fetus. From my clinical experience and survey of families with Down's syndrome children, we need to be very careful about its interpretation.
During a study over the last year at our clinic for Down's syndrome, we have had experience with 40 pregnancies of women who had a previous case of Down's syndrome. They were asked to make a decision whether to use amniocentesis , after being given full information about prenatal diagnosis. In this situation 23 chose prenatal diagnosis by amniocentesis and the other 17 (43%) did not.
To our knowledge there is not a similar study in the literature, but a variety of psychological analyses on women in various situations. One such study says that only 5% of pregnant women in Japan were against prenatal diagnosis, and 2% of mothers with handicapped children (Y. Shirai 1990). This discrepancy can be explained by different behaviours of the women most concerned from those not concerned. Policy making should not fail to pay much attention to these intrinsic deviations in sampling and data.
I look forward to receiving any comments from yourself or from readers.
I asked Dr Iinuma to publish his letter in the Newsletter after he sent me this interesting letter. The study is being written up in Japanese, and they will also continue to monitor the choice of prenatal diagnosis by mothers and families with a member who is suffering from Down's. I hope some others may refer us to some other studies.
The result obtained is not surprising to me, and is consistent with several US studies referred to in my book Attitudes to Genetic Engineering (on Japanese surveys including those of Y. Shirai referred to above, up to 1992 see p.118-119), that families (of certain conservative religious groups) with a member who had cystic fibrosis, showed less willingness to use selective abortion than the general population; Wertz et al. (1991), AJPH 81: 992-6; Miller & Schwartz (1992), AJPH 82: 236-42. However, we could arguably say that Down's is significantly more severe than cystic fibrosis, so the results of the study of Dr Iinuma above are important. The dilemma of prenatal diagnosis for a family with a member already suffering from the disease is a little different from the dilemma of a mother facing the decision with an image of a disease that is more removed.
The basic implication of these studies does not, in my mind, change the general conclusion of the attitude studies of mine (and others, to be shown in the forthcoming Fukui Seminar proceedings), that genetic screening is supported by the general population, as is selective abortion. The decision must be made by the mother, and family. The experience of Dr Iinuma, and any other clinical geneticists with some data, could have an additional value, if it can be extended to look at the reasons used by the families. This may enable policy to implement better social services and support, and educational aid, and to improve public acceptance, of our fellow citizens and families with Down's and other handicaps to living.
As extra background to our non-Japanese readers we should add that especially during the last year support groups for Down's syndrome have made media appearances stressing the "beneficial experience" of having a member with Down's syndrome, and opposing selective abortion. Prenatal screening services in Japan are at a very early stage, only about 5000 aminocenteses are performed in the whole country every year, and it is not well supported by facilities due to the opposition movement, despite the very high general public acceptance.