Genetic information and the family in Japan


pp. 855-859 in Encyclopedia of the Human Genome (Nature MacMillan, 2003).
Author: Darryl R. J. Macer

Institute of Biological Sciences, University of Tsukuba,
Tsukuba Science City 305-8572, Japan
Fax: Int+81-298-53-6614
Email: Macer@sakura.cc.tsukuba.ac.jp
Director, Eubios Ethics Institute <http://eubios.info/index.html>

Description
There are some historical fears over the use of genetic information in Japan, which makes rural people hide the presence of genetic disease in their family. That information has also been used in the past as a barrier for marriage. In urban and modern Japan this image is changing, and genetic counseling is slowly being introduced. There are guidelines of the Japan Society of Human Genetics that attempt to protect the clients and family. The general medical ethics of Japan view the patient as a member of a family more than in the West, and results of surveys are presented which look at people's images of genetic privacy.

1. Introduction to Japanese medical ethics
Our genetic make-up contains part of a person's most private information, their genetic sequence. With this acquired knowledge not only can the person's personal history be screened, but also their medical history and future prognosis can be revealed from the genetic information, as described in other papers in this volume. Without appropriate ethical guidelines, the misuse of genetic information may lead to social discrimination. Social classifications and discrimination depend upon the cultural norms of a society, and there are different ways that parts of personal information are shared or kept secret in different cultures, as between individuals.
Japan as a Island has developed some of its own medical ethics, merging Buddhist and Confucian rules into a Shinto background, with a recent importation of Western values (Macer, 1999). Japanese ethics could be said to now be rather pragmatic and centred on the authorities. There is universal health insurance that does support the concept of social justice and access for all to health, supported by taxes. While the principle of justice is accepted socially, the increasing proportion of aged persons means sick people are expected to pay a slightly higher proportion of the medical costs themselves to lessen the tax burden. While the sick expect to be covered from this insurance, most do not want to be a burden on the state or family. However the family is expected to support sick persons more than in Western cultures, as a general rule, and including practical issues such as bed linen and towels for a hospital stay.
The involvement of the family means that some modern Western ideas on confidentiality are not yet accepted in Asian medical practice. The family may be told medical news earlier than the patient. In Japan we see a number of sick persons who know they have a terminal illness, play a "game of avoiding to hurt another" pretending they do not know the seriousness of the disease family members who pretend the patient is not terminally ill. Modern Asia however is individualistic and patient rights are being promoted by many persons, so medical ethics is in a transition phase that is not able to be really separated from broader socio-economic changes. The late twentieth century has seen rapid evolution of the concepts of how a person is integrated into the family, and the boundaries of the family one dwells with (Maekawa and Macer, 1998).
Informed consent is becoming accepted, and bioethics is part of a transition that is transforming Japanese society from a paternalistic society to an individualistic one. The evolution of concept of patient autonomy is seen, from a trend that is reflected in all Asian cultures for paternalistic compassion and love, towards informed decision making. [see Bioethics in Asia article] The situation is not so simple to claim that in the past people did not have autonomy, and that physicians always acted paternalistically. The sick may prefer to leave the decisions up to others, or use subtle linguistic expressions to convey their will, as seen in language in general. However, there is still a hierarchical social system that makes it difficult for patient and doctor to be truly at an equal level in their relationship. Even more so, the concept of informed choice where the patient becomes the consumer of medicines, is only seen in the pharmacy stores but not in the medical consultation. Many sick persons are afraid to be a bother or burden to others so they attempt to avoid trouble that could occur if they clearly expressed their will and it differed from others.

2. Privacy and Genetics in Japan
A visitor to Japan may notice immediately one illustration of this difference if they stay in a hotel or a dormitory with a public bath. The same is seen in hot spring resorts. Namely, all in seen, and there appears to be no shame in exposing ones' body to others of the same gender in these places. For a Westerner public showers are limited to some sports facilities or changing rooms at swimming pools, and many do not like to bare all. For Indian persons to even enter a pool in swimming costume is only now becoming accepted. To give a genetic example, in Japan people openly talk of their blood type, A,B, or O, and have deterministic ideas on the relationship of blood type ot personality type. Whether or not this has any scientific basis, the point is that this issue of genetic identity is discussed between people with almost no hesitation. This and other anecdotal experience suggests that the idea of personal privacy in Japan is not as common as it seems to be in the United States, for example.
However, when it comes to genetic disease we see an opposite comparison, which is linked to the issue of genetic discrimination. In traditional populations in Japan, familial reputation is what most Japanese people are concerned about when they come for genetic counselling (Kawashima, 1992). Some of the attitudes Kawashima reported from genetic counselling in rural Japan, particularly harsh discrimination against a daughter-in-law who bears a child with a genetic disease, would rarely occur, in Tokyo. Genetic disease may be hidden as best as it can be by the family.
There are guidelines from the Japan Society of Human Genetics, revised in the year 2000, and these consider these issues. To quote relevant articles (Matsuda, 2001):
"5. Client and their family have both the right to know and the right not to know, which should be equally respected. Therefore, genetic counseling and genetic tests using personal identifying samples, should be based on the autonomous decision made by the person taking the test. This decision should not be instructed or guided by the counselor. Under this situation, the client has the alternative not to take the test, and that they will not suffer any disadvantage should be explained. Especially for pre-symptomatic diagnosis of adult onset genetic disease, there need to be multiple counseling sessions prior to any tests, and the decision of the subject must be shown to be the result of their own autonomous decision making.
14.All personal genetic information must be kept confidential and basically it cannot be told to another person unless the subject allows doing so. Utmost care is needed so this information is not used as a source of discrimination.
15. It is suggested that the result be told to family members and to have them tested if the test result can be used to prevent or cure the subjects' family members disease, not only for single gene disorders but also for multiple gene disorders (i.e. familial tumor). When the subject does not confirm to reveal the information to his family after repetitious persuasion, and that information could certainly stop the suffering of the family, it may be ethically acceptable to reveal the genetic information only for diagnosis, prevention and treatment. Whether to share the information or not should be following the judgment of the appropriate ethics committee, not by the counselor."

3. Results of surveys
In response to public surveys, some persons mention that their family might hide the fact if there was a closely related person with a genetic disease (Maekawa and Macer, 1999). Some say that if someone had a genetic disease, they would advice that person not to have any children. These two opinions may sound very harsh, but some people still have such views when talking with their friends about people with genetic disease having children. Older persons in the family will still advise younger persons to be very careful when choosing a spouse, and include any history of genetic disease into the calculations of what is an acceptable "mate" for their children.
In the 1993 International Bioethics Survey people in ten countries were asked the question "If someone is a carrier of a defective gene or has a genetic disease, who else besides that person deserves to know that information?" (Macer, 1994). In Japan, 90% said the spouse deserved to know. This result was similar to other countries. When asked if the other immediate family deserved to know, 89% in Japan said they did, which means they do not distinguish between spouse and other immediate family. The same is true for the public and medical student samples. Identical proportions for family and spouse were only seen in Japan, although about 90% of Thailand, Philippines and Singapore respondents also thought that the immediate family deserved to know. People in these countries seem to respect their family more than in the USA, Australia, New Zealand, Russia, Israel and India, where at least a quarter of the people who said the spouse deserved to know said the other immediate family did not. India is also Asian, but was distinct from the more East Asian countries in this question. We can ask whether this aspect of family when discussing privacy is unique to Japanese culture.
To get a better view of who people think are in their "family" for sharing information, a survey was conducted in July-September, 1998 in one part of Japan, in the Tsukuba area (Maekawa & Macer, 1999). The survey focused on these three points: 1) People's awareness of genetic information and technology, 2) People's idea of privacy and, 3) The familial role when discussing privacy. The sample of 245 persons was mixed, with 42% male, but 51% were under 30 years old. Overall 56% were single, 39% married, 64% had no children, 20% were Buddhist but 77% said they had no religion.
Only 49% of respondents had heard of genetic testing to predict whether they would develop a genetic disease later in life, in 1998. This compares to 36% who said they had heard of preimplantation diagnosis in 1997 and 58% in a 2000 survey across Japan (Chen Ng et al. 2000). In the 1998 survey, when asked whether they would take the genetic test with either Yes or No responses, 67% said that they would want such a test for cancer, 60% said for Alzheimer's disease, 64% said for a disease like Down's syndrome or muscular dystrophy. Two thirds (66%) said that they would want to know the result even if there is no way to lower the risk. These results are somewhat more positive than the 1991 survey among students, public and scientist samples in Japan (Macer, 1992) where 50-57% said they would take a genetic disease for a fatal disease that develops later in life.
In the 1998 survey, regarding privacy, 74% said that they would share their test results with someone else, and 34% mentioned family in general, 34% spouse, 18% parents, 15% friends, 10% children, with only 1% mentioning siblings (Maekawa and Macer, 1999). A few more, 80%, said they would share other health related problems with someone also, and for this question only 20% mentioned family in general, 17% spouse, 10% parents, 5% children, 2% mentioning siblings, with an increase to 24% mentioning friends and 4% mentioned doctors. These results are lower than the 1993 International Bioethics Survey which was conducted on nationwide public samples (Macer 1994), in which 90% said they would share the results of a genetic test with their spouse, fiance or immediate family, as mentioned above. In the 1998 survey we can see the more detailed break down to family members.
In the 1998 survey, a general question on privacy was asked, and 82% said that a key point in choosing a specific person was the depth of relationship with that person, 32% said professional knowledge, and 7% for other reasons. Only 3% said gender was a factor. The last question was on how wide they consider their family to be. 84% included parents, 79% spouse, 77% their children, 72% siblings, 42% grandparents, but only 5% included aunts and uncles, and 5% nieces and nephews. This concept is quite important to clarify if we are to interpret the 1993 survey results between cultures, because the image of who is in the "immediate family" may vary. Half the people who answered the 1998 survey were under 30 years, so our result may not reflect the traditional rural views of the area as much as the newer population of Tsukuba Science City. There could be interesting cultural differences within Japan between traditional and young minds. Tsukuba has unique history, as until 1970 Tsukuba was a rural area where farmers lived and worked, then the government artificially made a Science City for Japanese advanced science and technology. Hence, people in the sample consisted of a sort of mosaic, made of people who had lived before and those who came afterwards.

4. Conclusions
The responses may also vary with the image of genetic disease. Genetic disease has a very serious sound in Japanese, and in addition is regarded not as bad luck but someones' fault. In surveys in 1993 and 1998 we have asked people how they would feel if they had a closely related person who had a genetic disease. People gave a range of comments, including both sides. More said that they would support family members than those that said they would not like to have that person.
There are some differences in who people would share genetic information with compared to other health related information. The words used may also affect the results, as pointed out by Morioka (1999). In the 1998 survey the Japanese term "kazoku" was used for family but in Japanese there are at least three words "kazoku", "ie", and "kakei"; are for English word "family", but their meanings are slightly different with each other. "Kazoku" is ordinary used for "family". "Ie" is a difficult concept; this has been the topic of debate in the field of cultural anthropology. In essence "ie" means functions or relations from ancestors to descendents that sometimes include adopted others. "Kakei" means "lineage", or historical chains of "ie". When analyzing Japanese concept of family, we have to be sensitive to nuances of these concepts. People's idea of genetic information may have a special connection to the concept of "kakei" and "ie", rather than "kazoku", that was used. It is important to discuss these aspects of what is a family when thinking about the relationship between culture and genetics.
The results of surveys show that there is strong support for the idea of genetic testing in Japan (Macer, 1992; 1994; Chen Ng et al. 2000). People do not however seem to differentiate this desire based on the type of disease, with similar results for cancer or genetic disease (Macer et al. 1996; Maekawa & Macer, 1999). The government however does not support genetic screening services very well, with limited support. Prenatal screening is not openly permitted under the law regulating abortion, however, it is reasonably widely practiced (Matsuda and Suzumori, 2000).
There is a need for genetic information to be put in the context of all other health information, and not to be treated with such high dread. There is also need for courses in genetic counselling to be developed in Japan, as there is a shortage of trained counselors. Individual clinics can purchase genetic tests from commercial suppliers however there has been concerns expressed about whether they really have non-directive and informed counseling. These genetic and counselling services need to be promoted, and there have been a series of conferences held to address some of the ethical issues they present (see Bibliography).


References
Chen Ng MA, Takeda C, Watanabe T and Macer D (2000) Attitudes of the Public and Scientists to Biotechnology in Japan at the start of 2000. Eubios Journal of Asian and International Bioethics 106: 106-13.
Kawashima H (1992) Different client's response at genetic clinics in Japan and the USA, and its ethical background. In Fujiki N & Macer DRJ (eds) Human Genome Research and Society, pp. 145-6. Christchurch: Eubios Ethics Institute.
Macer, DRJ (1992) Attitudes to Genetic Engineering: Japanese and International Comparisons. Christchurch: Eubios Ethics Institute.
Macer, DRJ (1994) Bioethics for the People by the People. Christchurch: Eubios Ethics Institute.
Macer D, Niimura Y, Umeno T and Wakai K (1996) Bioethical attitudes of Japanese university doctors, and members of Japan Association of Bioethics. Eubios Journal of Asian and International Bioethics 6: 33-48.
Macer DRJ (1998) Bioethics is Love of Life. Christchurch : Eubios Ethics Institute.
Macer DRJ (1999) Bioethics in and from Asia. Journal of Medical Ethics 25: 293-295.
Maekawa F and Macer D (1998) The Japanese concept of familial privacy and genetic information. Eubios Journal of Asian and International Bioethics 9: 66-69.
Guidelines for Genetic Testing
Matsuda I (2001) Guidelines for Genetic Testing. In Fujiki N, Sudo M and Macer D. (eds) Bioethics and the Impact of Human Genome Research in the 21st Century. Christchurch: Eubios Ethics Institute.
Matsuda I and Suzumori K (2000) Prenatal genetic testing in Japan. Community Genetics, 3:12-16.
Morioka, M. (1999) Commentary on Maekawa and Macer. Eubios Journal of Asian and International Bioethics 9: 69-70.


Bibliography
(See on-line publications of Eubios Ethics Institute; http://eubios.info/index.html).)
Fujiki N & Macer DRJ (eds) (1992) Human Genome Research and Society. Christchurch: Eubios Ethics Institute.
Eubios Fujiki N & Macer DRJ (eds) (1994) Intractable Neurological Disorders, Human Genome Research and Society. Christchurch: Eubios Ethics Institute.
Macer, DRJ (1998) Ethics and Prenatal Diagnosis. In Milunsky A. Genetic Disorders and the Fetus: Diagnosis, Prevention and Treatment, pp. 999-1024. Baltimore: John Hopkins University Press.
Fujiki N & Macer DRJ (eds) (1998) Bioethics in Asia. Christchurch: Eubios Ethics Institute.
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