- Yasuko Shirai
National Institute of Mental Health, NCNP,
Kohnodai, Ichikawa, Chiba, Japan
Eubios Journal of Asian and International Bioethics 7 (1997), 49-52.
Dramatic advances in medical genetics and reproductive medicine have occurred in the last two decades. Especially with respect to human procreation, the technological combination of in vitro fertilization (IVF) and human genome research opened the door to genetic testing and selection of non-affected human embryos. A procedure derived from a combination of IVF and prenatal diagnosis techniques is known as preimplantation diagnosis. This procedure is the earliest form of prenatal diagnosis which is an alternative to the existing prenatal diagnosis for genetic disorders.
Preimplantation diagnosis requires removal of eggs from a woman's ovaries and fertilizing them outside of her womb. When fertilized eggs have divided into four to eight cells, one of these cells can be removed for testing for genetic disorders. After the testing, genetically healthy embryos are selected for implantation. This procedure also helps infertile couples avoid the risks of implantation of affected embryos. Thus preimplantation diagnosis may raise new medico-legal and ethical problems compared to existing in vitro fertilization services.
Among the developed countries, many medical
professionals have pursued the development of DNA testing for
genetic disorders, especially cystic fibrosis, Duchenne muscular
dystrophy, Down's syndrome and so on (2). Many Japanese gynecologists
share these same goals (14).
2. The Present Status of Preimplantation Diagnosis in Japan
In July, 1993, a gynecologists' group from Kagoshima University Medical School started to prepare for the use of preimplantation diagnosis, and they submitted an application form to the Ethics Committee of Kagoshima University Medical School. At the beginning of the examination process, the Ethics Committee appeared to be heading towards approving the application. However, they abstained from deciding until December, 1995 due to movements by some handicapped persons' groups and women's liberation groups against this proposal. During this period, the Ethics Committee of Kagoshima University Medical School asked for a formal judgment on preimplantation diagnosis from the Ethics Committee of the Japan Society of Obstetrics and Gynecology (JSOBGY). In September 1995, JSOBGY sent the request back to Kagoshima without any judgment, suggesting that the final judgment be made by the Ethics Committee of Kagoshima University Medical School. On 10th February, 1997, the Ethics Committee of JSOBGY decided to approve the use of preimplantation diagnosis for certain genetic disorders; for example, Duchenne muscular dystrophy and Fragile X syndrome. Following that, the Board submitted their decision to the Board of Directors of JSOBGY on 22nd February, 1997. However, the board abstained from deciding, due to the movements by some patients' association, handicapped persons' groups and women' liberation groups against their decision.
Many Japanese gynecologists have begun
to prepare for the clinical use of preimplantation diagnosis for
certain genetic disorders; however, there has been little consideration
of ethical and social implications of the procedure (7), and the
JSOBGY has yet to decide on the recommendations of its ethics
3. Professionals' attitudes toward preimplantation diagnosis
To ascertain how some Japanese professionals think about preimplantation diagnosis, I conducted an opinion survey of professionals' attitudes toward preimplantation diagnosis and some related issues, especially prenatal diagnosis following selective abortion, and the right to life of a fetus less than three months old.
The survey was conducted in July, 1994, with the cooperation of the Japanese Society of Human Genetics (JSHG; total current membership is 1,321) and the Japanese Society of Inherited Metabolic Disease (total current membership is 615). Through a random sampling method, 600 members from the first group and 100 members from the second group were selected as respondents. Seven hundred questionnaires including 15 questions were distributed by mail, and a total of 358 responses were received (a response rate of 51.1%).
Male 292 (81.6%)
Female 65 (18.2%)
Uncertain Gender 1 ( 0.3%)
Age: Under 35 116 (32.4%)
36-49 144 (40.0%)
50-59 55 (15.4%)
60+ 41 (11.4%)
Uncertain 2 (0.6%)
Medicine 302 (84.4%)
Natural Science 49 (13.7%)
Uncertain 7 (2%)
Table 1 lists the characteristics of the
respondents. More than 80% of the respondents were male medical
doctors. The age of the respondents ranged from 23 to 87 years
old, and the average age was 43.2 years old (SD=11.7). The respondents
were divided into three groups by age. The valid answers of a
total of 356 respondents were used in the following analysis.
Group 1 included 116 respondents who were less than 36 years of
age, Group 2 included 144 respondents aged 36 to 49, and Group
3 included 96 respondents who were 50 or more years of age.
3.2. Attitude toward prenatal diagnosis used for selective abortion
Figure 1 presents the respondents' attitudes
toward prenatal diagnosis used for selective abortion of a defective
fetus. More than 85% of a total of respondents were in favour
of prenatal diagnosis. 5% were opposed, and 9% abstained. There
was no statistically significant attitudinal difference among
the three age groups on prenatal diagnosis used for selective
3.3. Attitude toward preimplantation diagnosis
Figure 2 illustrates the respondents'
attitudes toward preimplantation diagnosis. More than 60% of the
respondents approved of preimplantation diagnosis. 18% were opposed,
and 19% abstained. There was no significant attitudinal difference
among the three age groups.
3.4. Attitude toward the right to life of a fetus less than three months old
Figure 3 indicates the respondents' attitudes
toward the right to life of a fetus less than 3 months old. In
this right-to-life issue, an attitudinal difference was suggested
among three groups. In Group 1, 43% of the respondents favored
the right to life of a fetus less than 3 months old, and 18% were
opposed. In Group 3, 32% favored the fetal right and 25% were
opposed. Nearly half of the respondents of Group 3 abstained
from declaring their position. This results suggested that the
younger the respondents were, the more likely they were to support
the fetal right to life (p=.0534 by chi-square test).
3.5. Attitude toward women's right to have an abortion within the first three months of pregnancy
Figure 4 represents the respondents' attitudes toward women's right to have an abortion within the first three months of pregnancy. About 67% of the respondents agreed with women's right to have an abortion. 15% were opposed, and 18% abstained. There was no significant attitudinal difference among the three age groups.
A significant attitudinal association
was shown between the issue of women's right to have an abortion
and the issue of preimplantation diagnosis: the respondents who
abstained from giving approval or disapproval of women's right
to have an abortion also abstained from approving or disapproving
of preimplantation diagnosis (p=.0001 by chi-square test).
3.6. The acceptance of preimplantation diagnosis in relation to attitudes toward prenatal diagnosis and fetal right to life
Some gynecologists assert that the benefit of preimplantation diagnosis is that its use could avoid many difficult decisions and potential psychological consequences of decisions to selectively terminate a genetically defective fetus. To examine the association of the survey respondents' attitudes on the right to life of a fetus less than three months old with their attitudes about preimplantation diagnosis, the respondents were newly divided into two groups by attitude about the use of prenatal diagnosis for selective abortion: one group included 294 respondents who favored prenatal diagnosis, and the other group included 51 respondents who were opposed to prenatal diagnosis or abstained.
Figure 5 illustrates the respondents'
acceptance of preimplantation diagnosis in relation to their attitudes
about prenatal diagnosis and fetal right-to-life. Of the respondents
who favored prenatal diagnosis, nearly 70% agreed to the use of
preimplantation diagnosis whether or not they approved of the
right to life of a fetus less than 3 months. In contrast, of the
respondents who were opposed to prenatal diagnosis or abstained,
a significant attitudinal association was suggested between the
right-to-life issue and the issue of preimplantation diagnosis:
about 60% of the respondents who agreed to the right to life of
a fetus were opposed to preimplantation diagnosis, while 50% of
those who were opposed the fetal right or abstained supported
preimplantation diagnosis (p=.0774 by chi-square test).
4. Comparisons to other surveys and groups
There have been a number of surveys on the attitudes groups of people in Japan have to prenatal diagnosis, but few on preimplantation diagnosis. The results of this survey find a high level of support of prenatal diagnosis among these doctors compared to other groups in Japan (3; 4; 5; 6). While some results of my previous survey in 1980 concerning physicians' attitudes toward prenatal diagnosis and selective abortion in Japan were consistent with the present survey; 412 physicians in Nagoya and Kanazawa returned questionnaires, including gynecologists, pediatricians and internists. More than 90% approved of prenatal diagnosis for a pregnant woman who had children with diagnosable genetic disorders. In this survey, 46% of the total respondents opposed the right to life of a defective fetus (10).
Based on a breakdown of the total number
of amniocentesis performed from 1971 through 1991 in the gynecology
clinic from Nagoya Municipal Medical School Hospital by indications
for the amniocentesis test, Suzumori (13) indicated that a shift
of a principal reason for having amniocentesis test occurred in
1983. Until 1982 pregnant women who already had children with
congenital anomalies had an amniocentesis test to confirm whether
a fetus had a certain genetic disorders. However, after 1983,
the indication of "advanced maternal age" gradually
increased in number, and after 1987, "pregnancy in an older
woman" became the principal reason for amniocentesis performed
in this clinic. This phenomenon is not peculiar to this clinic,
but very common in other gynecology clinics/hospital (15). In
a study I made of women's attitudes to selective abortion in 1978,
407 women in Aichi prefecture returned questionnaires, including
pregnant women, and mother's of children that were and were not
suffering from mental retardation. 89% approved of prenatal diagnosis,
and 88% agreed with abortion in the case of a diseased fetus compared
to 47% who agreed with abortion in the case of an unaffected fetus
(9; 12). There was a trend for higher educated women to be more
approving of abortion in both cases. However, there were conflicting
attitudes found, such as 28% of the total approving with the right
to life of a severely affected fetus.
5. Discussion and Conclusion
Based on the results of the survey, the following points are suggested. 1) More than 60% of the respondents favoured preimplantation diagnosis. The respondents' age did not play a significant role in their attitude toward the procedure, consistent with the views on prenatal diagnosis in the Japanese public surveys in 1991 and 1993 of Macer (4), and in the Japanese women and co-medical staffs surveys in 1978 and 1980 of Shirai (9; 11; 12). 2) A significant attitudinal difference was found regarding the right to life of a fetus less than 3 months old among the three age groups. 3) The attitude on the right-to-life issue may be an important factor in assessing attitudes toward preimplantation diagnosis.
In Japan, genetic disorders are always a serious family problem. In the traditional Japanese way of thinking, genetic disorders were regarded as a shameful occurrence to be hidden from society. The traditional religious teaching in our society contributed to as idea that genetic disorders were the result of misconduct in a previous generation of the family (8). Although such ideas have rapidly diminished in its impact, there are still implicit discrimination and prejudice against those who have genetic disorders and/or those who have a family history related to it. A person and his/her family with genetic problems are almost always faced with not only medical problems but also psychological problems and ethical dilemma. If prenatal diagnosis becomes a routine screening procedure without sufficient genetic counseling induced by doctors' affirmative attitudes toward prenatal diagnosis, the autonomy of a woman and her right of self-determination might be diminished.
Considering a provision of preimplantation diagnosis, I would like to modify some critical issues on assessing social implications of genetic testing suggested by the Committee on Assessing Genetic Risks in USA (1) and apply them to preimplantation diagnosis: First, preimplantation diagnosis may strengthen the notion of "selective birth" based on genetic predisposition. Second, it will open another door to germ-line gene therapy. Third, it may accelerate a tendency to fix a stigma upon a person due to his/her genetic predisposition. These three issues should be examined and discussed openly and in depth. It is indispensable to consider whether preimplantation diagnosis should be allowed as a standard test for all the diagnosable genetic disorders.
We should note that the Japan Society
for Human Genetics issued guidelines on genetic testing and prenatal
diagnosis in 1995 (see EJAIB 6 (1996), 137-8). It remains
an urgent task to establish guidelines for preimplantation diagnosis,
and more widely used guidelines on the provision of genetic counseling
services. Open public discussion, considered in the light of culture,
religion, ethics, and jurisprudence, is also essential.
1. Andrews LB, Fullarton JE, Holtzman NA
& Motulsky G(eds.): Assessing Genetic Risks: Implications
for health and social policy. National Academy Press, Washington,
2. Fletcher, JC & Anderson WF: Germ-line gene therapy: A new stage of debate. Law, Medicine & Health Care 20(1-2): 26-39, 1992.
3. Macer DRJ: Attitudes to Genetic Engineering: Japanese and International Comparisons. Eubios Ethics Institute, 1992. pp.114-122.
4. Macer DRJ: Bioethics for the People by the People. Eubios Ethics Institute, 1994. pp.148-149.
5. Macer D: The challenge of universal bioethics and genetics. pp.70-74 in Okamoto M, Fujiki N & Macer DRJ (eds.): Protection of the Human Genome and Scientific Responsibility: Eubios Ethics Institute, 1996.
6. Hirayama M, Nakazaki S, Fujiki N: Consensus survey on handicaps and heredity. pp.188-191 in N. Fujiki N, D.R.J. Macer DRJ (eds.): Intractable Neurological Disorders, Human Genome Research and Society. Eubios Ethics Institute, 1994.
7. Japan Society of Fertility and Sterility: The Guidelines on New Reproductive Technologies. Kanehara Shuppann, Tokyo, 1996 (J). pp.163-171.
8. Ohkura K & Kimura R: Ethics and Medical Genetics in Japan. pp. 294-316 in Wertz DC, Fletcher JC (eds.): Ethics and Human Genetics: A Cross-Cultural Perspective. Springer-Verlag, 1989.
9. Shirai Y: Structure of prejudice against the handicapped persons(III): Married women's attitudes toward children with mental retardation. Annual report of the Department of Social Welfare 4:33-46, 1979 (Institute for Developmental Research, Aichi Prefectural Colony; in Japanese).
10. Shirai Y: Bioethics and Intervention in Human Life(I): Physicians' attitudes toward prenatal diagnosis and selective abortion. Annual report of the Department of Social Welfare 6:1-8, 1981 (Institute for Developmental Research, Aichi Prefectural Colony, in Japanese).
11. Shirai Y: Bioethics and Intervention in Human Life(II): Allied health personnels' attitudes toward prenatal diagnosis and selective abortion. Annual report of the Department of Social Welfare 7: 1-11, 1982 (Institute for Developmental Research, Aichi Prefectural Colony, in Japanese).
12. Shirai Y: Japanese women's attitudes toward selective abortion: a pilot study in Aichi prefecture. Studies in Humanities 23: 25-36, 1989(Matsumoto: Shinshu University).
13. Suzumori K: Prenatal diagnosis and present situation of amniocentesis. Sexual Sciences 1: 9-21, 1992 (J).
14. Takeuchi K & Nagata Y: Embryo biopsy and genetic diagnosis. Igaku no Ayumi 172(4):244-247,1995 (J).
15. Zimbo T, Nishijima M, Koyanagi K et al.: A study on guideline for dealing with congenital fetal anomalies. pp. 97-147 in The Report of research group on monitoring oncogenital malformations. The Ministry of Health and Welfare, 1992. (J).
This is based on a paper presented at the 10th International Congress of IASSID (July 9, 1996, Helsinki, Finland).
Note the figures are not on-line