- Fumi Maekawa & Darryl Macer,
Institute of Biological Sciences, University of Tsukuba,
Tsukuba Science City, 305-8572, Japan
Email: pumi@mx2.ttcn.ne.jp
Email: asianbioethics@yahoo.co.nz
Eubios Journal of Asian and International Bioethics 9 (1999), 66-69.

We are about to determine the genetic make-up of human beings. It is not far before the time comes when a person's most private information, their genetic sequence, can be revealed. This will have a great impact on society, since 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. Already specific genetic mutations are known to be responsible for certain diseases such as breast cancer, Alzheimer's disease, Down's syndrome, etc. Without appropriate ethical guidelines, the misuse of genetic information may lead to social discrimination. This problem has to be discussed from a global point of view, however, at the same time the personal point of view should not be neglected.

We have noticed from anecdotal experience that the idea of privacy in Japan is not as common as it seems to be in the United States, for example. According to a survey quoted in a book "Japanese Nationality", by the Japan Area Development Center, 13% of people in Japan (N=2,698) answered that their family was the most important thing in their life. It was one of the 9 options, following 26% who selected life and health. The 1973 survey revealed that the number of people answering life and health has decreased while the proportion choosing family has increased, since 1960 . As an overall view, the three answers; life and health, children and family, are the most common answers for people between the late 20's to mid 50's, being almost a half of the answers. This is consistent with the idea that in day to day life, people are very concerned about their family, along with their health, life and children.

Hiroko Kawashima (1992), the head of Wajima public health office, noted in The Second International Fukui Bioethics Seminar, that familial reputation is what most Japanese people are concerned about when they come for genetic counseling. In response to the survey, one person mentioned that her family might hide the fact if there was a closely related person with a genetic disease. Also one person mentioned that if he had a genetic disease, he would advice that person not to have any children. These two opinions may sound very harsh, but seems to look at the real world from a very rational point of view. For example, some older people still have such views when talking with their friends about people with genetic disease having children, or advise younger persons to be very careful when choosing a spouse.

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 as in other countries when asked for the other immediate family, i.e. 89% in Japan said they did not distinguish between them. The same is true of the medical students. 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. Is the aspect of family when discussing privacy unique to Japanese culture? This is another interesting question. 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 Eastern countries in this question.

Survey on privacy and genetic disease

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 Tsukuba area, focusing 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. Sampling was principally conducted through patrons to a restaurant, a shop, and asking people in a community centre. It was possible to survey people in a park, but not while standing outside a supermarket. The sample of 245 persons was mixed, 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. 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 scientists in Japan (Macer, 1992) where 50-57% said they would take a genetic disease for a fatal disease that develops later in life.

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. 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 (Table 1). These results are lower than the 1993 International Bioethics Survey (Macer 1994), in which 90% said they would share the results of a genetic test with their spouse, fiancee or immediate family. 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.

Table 1: Who to share genetic information with...

If you know the result, would you share it with somebody?	Would you share other health related problems with somebody?
Yes 74%	Yes 80%
If yes, who with? (Open)	If yes, who with? (Open)
34% family	20% family
34% spouse	17% spouse
18% parents	10% parents
10% children	5% children
1% brother/sister	2% brother/sister
15% friends	24% friends
0% doctors	4% doctors
8% other comments*	24% other comments

*Other comments did not relate to the person to be told

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.

When asked how they would feel if they had a closely related person who had a genetic disease, people gave a range of comments, summarized in Table 2. One quarter said people are the same, 10% said they would help them, 6% would seek advice from others on what to do, and 3% said they wanted to be positive to them. 4% said it depended on the illness. 3% said in theory they would like to help but they were not sure whether they could. 1% said they would be afraid, 3% said they or their family would reject them, and 2% thought the person was risky, and 1% said they felt helpless. However, one quarter did not say anything and 15% said they don't know.

Table 2: Feelings towards persons with a genetic disease. Results of current survey are compared to those from written anonymous mail response surveys by the Japanese public in the International Bioethics Survey of 1993 (Kato & Macer in Macer, 1994).

Feelings	1998	Hemo-philia	MD (1993)
Not Stated	27	29	30
Don't know	15	7	6
Sympathy/Compassion	0	33	32
Want to help, but..	2.4	2.3	2.3
Happy with hope for therapy	-	17	19
Helping	11	0.6	1
Depend on reason ill	2.9	0	0
On edge/	.4	0	0
People are same	25	7	5.2
Admire	2.4	0.6	0.6
Can happen to anyone	0	1	1
Own fault/self-help	0.8	0.6	0.6
Rejection/abnormal	2.4	0.3	0.3
Afraid/risk	2.8	0	0
Talk to get advice	6	0	0
Helpless	0.8	1.7	1.4
Other	2	.9	1.4

The full list of comments is in the appendix to this paper. To illustrate the process of categorization, some of the comments are given below when asking how they would feel if they had a closely related person who had a genetic disease. Each comment was assigned to one category only.

People are the same, e.g.

Nothing special. If that person is already ill, I would treat them as an ordinary sick person, if not, nothing special. Personally I wouldn't do anything special.

This is because I think that anybody who has some kind of deficiency would want to be treated as an ordinary person. Of course, if there is anything unfair by doing so, I would consider that. The family shouldn't react too sensitively, too.

10% would help them, e.g.

Support them with a warm heart. At first I might be very enthusiastic but gradually it might become too much pressure.

Basically I would like for them to do what they want to do. I won't look at the negative side, but try to support fully what they can do.

6% would seek advice from others on what to do, e.g.

Talk with each other, get advice from a professional doctor and take the best possible treatment.

3% said they wanted to be positive to them, e.g.

I want to think positively.

4% said it depended on the illness, e.g.

Differs by the disease. Depends, but I would be worried about marriage, should I have children, etc. I would get advice.

Differs from the severity of the disease. Get advice from a doctor and think of a solution.

3% said in theory they would like to help but they were not sure whether they could,

I hope I could treat them as usual...

I hope my family would act normal.

1% said they would be afraid, e.g.

If the disease could be transmitted, I would be worried about other people's reaction.

3% said they or their family would reject them, e.g.

I have not thought about it, but I think I would stop them from having a child.

Both my parents and I would hide the fact. If there is a cure, I would advice them to go to the hospital.

2% thought the person was risky, e.g.

If I find someone close to me with a genetic disease, I would have a check, too.

1% said they felt helpless, e.g.

There isn't anything that I can do, is there?

Conclusion

The results were striking by the absence of sympathy or compassion comments which were about 23% of the answers to a similar question in the 1993 survey that gave specific examples, hemophilia and muscular dystrophy (Macer, 1994). We suggest that naming a specific disease may shift some people's response from people are the same to sympathy, because in 1993 only about 6% said people are the same in open comments, compared to 23% in this survey.

The results show that there continues to be strong support for the idea of genetic testing in Japan. People do not however seem to differentiate this desire based on the type of disease, with similar results for cancer or genetic disease, as seen in earlier surveys also (Macer et al. 1996). There are some differences in who people would share genetic information with compared to other health related information (Table 1). This will be explored further.

There is quite a variety of feelings towards genetic disease as seen in open comments, so we cannot just rely on simple questions in opinion surveys. The words used may also affect the results, as pointed out by Morioka in the commentary. We used the Japanese term "kazoku" for family but others could be used. Half the people who answered this survey were under 30 years, so our result may not reflect the traditional rural views of the area as much as the newer population. This may also mean the understanding of science of the sample in the sample is better than the general population in Japan. If simple words are used most people could understand the concepts of genetic testing, though perhaps none of us can understand the full implications of the genetic era. We agree with Morioka, that there could be interesting cultural differences within Japan between traditional and young minds. We hope more research will be conducted on this issue, as both old and young face genetic tests.

Kawashima, Hiroko, "Different client's response at genetic clinics in Japan and the USA, and its ethical background", pp. 145-6 in Human Genome Research and Society, eds., N. Fujiki & D.R.J. Macer (Christchurch: Eubios Ethics Institute, 1992).
Macer, Darryl R.J., Attitudes to Genetic Engineering: Japanese and International Comparisons, 162 pp. (bilingual English and Japanese), ISBN 0-908897-02-2, Japanese and English (Christchurch: Eubios Ethics Institute, 1992).
Macer, Darryl R.J., Bioethics for the People by the People; 460pp., ISBN 0-908897-05-7 (Christchurch: Eubios Ethics Institute, 1994).
Macer, D., Niimura, Y., Umeno, T. & Wakai, K. (1996) "Bioethical attitudes of Japanese university doctors, and members of Japan Association of Bioethics", Eubios Journal of Asian and International Bioethics (EJAIB) 6, 33-48.

People's comments when asked, How would you react if you had a closely related person with a genetic disease? [The numbers refer to arbitrary items in the datasheet and are only for reference]:
1. Be nice.
2. My reaction may differ depending on the disease.
3. Talk with people that I have close relations with, or people who have professional knowledge.
5. Same as usual.
6. Try to think of possible ways to react, including how to get advice from special organization.
7. Don't know.
8. I might try to support the patient for the illness, my family might do the same.
9. I will check if there is anything that I can advise on or get information about the disease.
10. Nothing special. If that person is already ill, I would treat them as an ordinary sick person, if not nothing special. Don't understand the point of the question.
11. Try to meet them as often as possible and talk to them.
12. Act the same.
29. Unknown.
30. Don't know.
32. Act normally.
34. Try to prevent it by eating properly.
35. If it relates to my children's marriage, I would try to search for a way to lower the risk.
39. Talk with each other.
41. Act the same way as I would to any other disease.
43. There isn't anything that I can do, is there?
44. Collect any information available at the moment, decide whether the information is true and considering these factors, I would decide under my logical thinking. For example, who and how much to tell. If the disease is fatal, I wouldn't tell it to anybody, and if there is some chance of cure, then I would try to react positively. Including brain death, what the present science technology is posing is not what a person can know, but what that knowledge results in, what could be the happiest choices. I don't have enough knowledge about genetics right now, so I would not take the gene test. As a base line, the test must be proved to give the information needed.
45. No special reaction.
47. It may differ by the disease but I would like to act as usual.
48. I think I will treat them the same way I would treat other people.
49. Nothing special.
50. I don't know. There might be some way to react, but different diseases might cause different reactions.
52. Reactions don't change, specifically.
53. Be worried, take care of them, help them in any possible ways. It is normal to do so.
54. I think my family would try to hide the situation.
55. As usual.
56. Support them with a warm heart. At first I might be very enthusiastic but gradually it might become too much pressure.
57. Not stated.
58. If I was asked for some advice I might do some thing, but otherwise nothing special.
60. Try to react normally, my family would do the same thing.
61. I wouldn't think of it too much and would treat them so.
62. I would do nothing.
64. I don't know.
65. Do my best.
66. Differs from the severity of the disease. Get advice from a doctor and think of a solution.
67. Don't worry.
68. Listen to them carefully and try to support them mentally.
69. Don't know if I'm not in that situation.
70. Basically I would like for them to do what they want. I won't look at the negative side, but try to support fully what they can do.
71. If it was my friend I would act as I did until then, but I might not be able to do so. If it is a disease or not, the reaction to them would not change, I think. For example I might scold them.
72. Support them as much as possible.
73. I don't know.
74. I don't know.
75. Treat them as usual.
76. Treat them as usual.
80. Study about the disease as much as possible.
81. Nothing.
82. I don't know.
83. ?
84. Panic!
85. Discriminate them.
86. Try to eat properly. Be their support.
88. Differs by the disease. Depends, but I would be worried about marriage, should I have children or not etc. I would get advice.
89. Don't do anything and act as usual.
90. Act naturally. Get information about the disease.
91. I won't do anything until the illness appears.
92. Think positively.
93. Study about the disease and talk with my family about what we should do.
94. ?
95. Talk with each other, get advice from a professional doctor and take the best possible treatment.
97. I don't know until I am in such a situation.
98. I don't know.
99. No difference from other people.
100. I would do something if there was anything I could do, if not I would do nothing. My family would be very cautious.
101. Help them with their therapy.
102. Same as other diseases.
103. Try to act as usual.
104. Treat them as I would treat any body. Nothing different to daily life.
105. Be nice.
106. Explain to them according to their knowledge, so that they can understand well. I wouldn't talk much about muscular dystrophy if the person already had a child.
107. React as usual. I don't know what my family would do.
108. I hope I could treat them as usual...
109. Don't worry.
110. I have not thought about it, but I think I would stop them from having a child. It might differ by the disease.
111. I don't have any body in that situation so I don't know.
112. I want to react scientifically and rationally.
113. Personally I wouldn't do anything special. This is because I think that anybody who has some kind of deficiency would want to be treated as an ordinary person. Of course, if there is anything unfair by doing so, I would consider that. The family shouldn't react too sensitively, too.
114. I wouldn't think about it so much.
115. If the person themselves doesn't want anything special, I wouldn't do anything special. My family would do the same thing I think.
116. Nothing special. I leave it to their decision.
117. If I find someone close to me with a genetic disease, I would have a check, too.
119. I would help so that they can have an ordinary social life.
122. Get advice from a professional doctor, and have specific treatment.
123. Not stated.
124. Stay calm and advise them to get the best treatment possible. React the same way I would to people with non genetic diseases. My family would do the same thing I think.
125. I don't know.
126. I don't have anybody in that situation thankfully, but I cannot talk about such a situation in my imagination. I think that reality is much harsher.
127. Accept reality and do the best thing at that point. I hope my family would react the same way.
128. Research how it is transferred to the next generation. I don't know how my family would react.
129. Try to help as much as possible for what the patient needs.
130. I don't know until I am in that situation.
138. I haven't been in that situation so I don't know.
139. I would like to treat them as I used to do. Normally.
140. I wouldn't do anything special. I would react as I usually do.
143. I want to think positively.
144. I don't know.
145. I don't know.
146. ?
150. Give them confidence.
153. Respect that person's feelings and help them as much as possible I can to make their wish come true.
155. I will act as I did before. I don't know how my family will react.
156. My family would not permit me to marry such people, but I wouldn't listen to them.
157. Same as usual.
158. Act normally.
159. I would try to cheer them up and my family would treat them as ordinary people.
161. If it was my really close friend then I would act normally, otherwise I might sympathize to them. I hope that my family would act as usual.
162. Case by case.
164. Same as I would treat anybody. I believe that my family would try to lower the risk. For example if it was cancer, then try to avoid cancer causing products.
165. No special reactions. If there is a way to stop the illness from appearing I would do that.
166. There is nothing I can do but I would talk to them. My family wouldn't do anything special, a fact is a fact.
167. I might be worried when I think of gene related topics but otherwise I won't be bothered.
168. I would try to help each other.
169. No special reactions. I don't know how my family would react.
170. No special reactions and I would react normally because the disease isn't that person's fault.
171. I think I won't do anything special.
172. I would advice to get continuous checking.
174. I would act naturally.
175. I would act normally.
176. Accept as it is as one of that person's personality. What to do or not do is that person's own choice.
177. One of my parents is psychologically ill. After the illness appeared, I tried to avoid relations with such people.
178. I don't know.
179. Depends on the disease.
180. I would first collect information about the disease and seek for a way to live together. I don't know what my family would do.
183. Try to determine how the illness is, then talk to doctors or hospitals and decide.
185. I would want to erase such a situation, even if genetic transfer is needed.
187. I don't know until that time comes.
188. If the disease could be transmitted, I would be worried about other people's reaction.
189. Now, I don't know until that time comes.
190. According to the situation, do possible things.
191. I believe that for genetic diseases, the environment or that person's health condition can have some kind of effect in the appearance of the disease, so I would get the correct information and act according to the information. If it could be cured by gene therapy, then I would accept therapy.
192. I don't know.
193. Accept the disease. I don't know how my family would react.
194. I don't know.
195. I would act normally, but my parents would try to hide the situation.
196. I don't know.
197. I wouldn't be able to react the same way I did before. I think that the person having the disease would change by knowing that he has the disease. So I would like to balance both person's feelings.
198. Both my parents and I would hide the fact. If there is a cure, I would advice them to go to the hospital.
199. It is a very difficult problem but, I would like support so that they can have a bright time. But I would never want to act differently to the time when I didn't know. I think my family would react the same way.
200. Through daily life, if that person has no difficulties, I would react the same way as ordinary people. If there are some difficulties, I would act to take those problems away. (Go to the hospital, helping) If there is an obvious pressure to other people's life because of the disease, then I would seek for government's help financially. My family would get financial aid since they are having trouble taking care of our grand parents.
201. If I had the disease I wouldn't get married. If there was a closely related person with the disease, then I wouldn't discriminate them, but rather be soft.
202. As that person wishes the most (I don't know what that might be till that day). I hope to treat them naturally and nothing different, I would want to be treated that way and I believe my relatives would do so.
203. As usual. I won't think about it too much.
204. Act normally. I think I will talk about it but my feelings towards that person won't change.
206. Appropriately. I don't now very much about genetic diseases, but even if it is someone who has a serious condition like a cancer patient is close to me, I would react normally.
207. I would listen to them, if they want to talk about it. If it was me, I don't know how my family would react.
209. Accept the truth, and support that person so they can live their future positively.
210. Try to treat them the same way as other people if it is possible. If special treatment is needed, then I shall have to do so.
211. I haven't thought about it especially. But if I knew, in reality I would be nervous I think.
212. Normally! Positively and cheerfully!! I think my family would do so, too.
213. Even if there was somebody with a genetic disease, I wouldn't know what to do, so I don't think I would do anything. I would just observe.
214. I would observe, My family would be worried.
215. React the same way I would to other people. I think my family would do so, too.
218. I don't think my reactions would change so much. I think my family would try to do something to lower the risk.
222. Nothing special.
223. Wouldn't worry so much.
224. Avoid talking about that disease.
227. I am not so strong emotionally so I couldn't stand it my self.
229. No change in reaction. It is a matter of relationship between my self, and the reaction won't change for the disease.
230. Try to accept when it happens, as it happens. Nothing less or nothing more.
231. Depends on the time and situation, try to help as much as I can do.
232. As normal as possible. I won't do anything beyond my capacity (I think they know well)
234. 1. Detect the cause of the disease. 2. Ask professional medical service. (to execute the original cause) Ask what kind of treatment I should do.
235. 1. Detect the cause of the disease. 2. Ask every medical service there is and ask the closest hospital what to do. 3. Tell my family and try to live accepting the disease.
237. 1. If that person doesn't want me to know, then I will pretend I don't know. 2. My family might feel some pressure, but I feel there is no need to treat specially. Everybody must have some factor, I thing it is just a matter of how strong it appears or not.
238. Depends on the relationship, but if it is a very deeply related person, then I would support them, take care and try to be close to them. But if not so closely related, then I think our relationship would become tense.
239. I would consider them as family, considering both their positive and negative side. As much as I can do.
240. I have somebody close to me in that situation. I would treat them normally.
241. Try hard to support them mentally, and research about the disease.
242. Live positively by sharing their worries as much as possible.
243. I think I would treat them the usual way. ( I don't think I would change my reaction towards them especially, but I might avoid that topic) I think my family won't mind so much, too.
244. Listen to them or support them.
245. I don't know. I guess I would talk with people and decide how to react.