5.6. A Study of Chinese View on Carrier Information in Pharmacogenetics Genetics and Disorders

pp. 63-66 in Bioethics and the Impact of Human Genome Research in the 21st Century

Author: Yanguang Wang (Chinese Academy of Social Sciences, China)

Editors: Norio Fujiki, Masakatu Sudo, and Darryl R. J. Macer
Eubios Ethics Institute

Copyright 2001, Eubios Ethics Institute All commercial rights reserved. This publication may be reproduced for limited educational or academic use, however please enquire with the author.

I am going to present the results of a questionnaire which includes a case, and use this to present some of the concerns Chinese experts have over medical genetics, in particular on carrier information.

The questionnaire includes questions like "Must the physician ask carrier to inform all members of family?", "Does the physician has moral rights and a legal obligation to inform all members of family?", "Do carriers have the obligation to inform family?", and "Do minor genetic disorders warrant disclosure". From evaluation by responding on a scale from strongly agree to strongly disagree, and comparing the responses with Europeans, a Chinese view on the carrier information in pharmacogenetics and disorders has become clearer.

The Case

Mrs. Han, a hypertension patient, suffered from adverse reaction when her medication was changed from a calcium antagonist to a beta blocker as the correct doses could not be established. `Now she has pain in her lower abdomen and renal hematuria, symptoms associated with ADPKD, an autosomal dominant genetic end stage renal disease. In retrospect, her father might have died of the same disorder 30 years ago without a diagnosis but with similar symptoms. Mrs. Han fortunately was accepted as a hemodialysis patient; she faces death, if dialysis will not be continued three times a week or if she does not get kidney transplant. Both substitution therapies have side-effects, are costly and not readily available except in economically rich countries. Most likely, members of Mrs. Han's family are presymptomatic carriers of ADPKD, the onset of which can be postponed by hypertension therapy. Genetic screening can be done prenatally and postnatally."

Responses were obtained from the following persons:

21 Chinese Geneticist Physicians from a Hong Kong conference

22 Chinese Ethicists and Philosophers from a Shanghai conference

55 nurses from hospitals in Beijing

42 nursing students of Medical College in Beijing

42 postgraduate students of the Peking Union Medical University

12 physicians and nurses of a Dortmund hospital

24 postgraduate students of the University of Vienna, Austria

100 business students of Frankfurt hospital

10 postgraduate students of Bochum University

The total number is 182 from China, and 146 from Europe.

Let me consider the results of the questions:

Q1. Must the physician ask Mrs. Han to inform all members of her family about her disorder and their prospective carrier status? 'strong yes' 'yes' emedium' estandard deviation'

Chinese Geneticist Physicians: 33.3% 28.6% 2.33 1.32

Chinese Ethicists Philosophers: 68.2% 9.1% 1.68 1.13

Chinese Nurses: 56.4% 20.0% 1.89 1.29

Chinese Nurse Students: 42.9% 38.1% 1.95 1.17

Chinese Postgraduate Students: 76.2% 11.9% 1.48 1.04

All Chinese: 56.6% 22.0% 1.84 1.21

All European: 0.3% 23.4% 1.71 1.07

Q2. Whether there was a moral right or duty of the physician to contact members of Mrs. Han's family? 'strong yes' 'yes' emedium' estandard deviation'

Chinese Geneticists Physicians: 5.0% 25.0% 3.35 1.31

Chinese Ethicists Philosophers: 45.5% 27.3% 1.95 1.13

Chinese Nurses : 58.2% 10.9% 1.96 1.33

Chinese Nurse Students: 45.2% 26.2% 2.05 1.25.

Chinese Postgraduate Students: 42.9% 23.8% 2.24 1.43

All Chinese: 44.2% 21.0% 2.20 1.36

All European: 28.3% 30.3% 2.57 1.40

Please note that the 'strongly disagree of Chinese Geneticists and Physicians was 30%. This shows that the Chinese geneticists do not think there is a strong moral duty to contact members of Mrs Han's family.

Q3. Does the physician should have a legal obligation to inform Mrs Han's family even against she's will? 'strong no' 'no' emedium' estandard deviation'

Chinese Geneticist Physicians: 40.0% 20.0% 3.85 1.14

Chinese Ethicists Philosophers: 31.8% 18.2% 3.50 1.34

Chinese Nurses: 43.6% 18.2% 3.75 1.36

Chinese Nurse Students: 40.5% 16.7% 3.67 1.36

Chinese Postgraduate Students: 47.6% 23.8% 3.88 1.42

All Chinese: 44.0% 19.3% 3.74 1.34

All Europeans: 44.0% 19% 3.71 1.43

eyes or no' of Chinese Geneticist Physicians: 25%.

eyes or no' of Chinese Ethicists Philosophers: 27.3%.

Q4. Whether Mrs. Han had a right to disclosure and to encourage her family members to seek diagnosis. 'Strong yes' 'yes' emedium' estandard deviation'

Chinese Geneticists Physicians: 47.6% 28.6% 1.81 0.93

Chinese Ethicists Philosophers: 63.6% 27.3% 1.45 0.67

Chinese Nurses: 65.5% 21.8% 1.56 0.98

Chinese Nurse Students: 62.5% 27.5% 1.53 0.85

Chinese Postgraduate Students: 78.6% 16.7% 1.26 0.85

All Chinese: 65.6% 23.3% 1.50 0.83

All European: 79.5% 14.4% 1.28 0.62

Q5. Whether there was an ethical obligation of Mrs. Han to inform?

'strong yes' 'yes' 'medium' 'standard deviation'

Chinese Geneticists Physicians: 19.0% 42.9% 2.48 1.21

Chinese Ethicists Philosophers: 63.6% 22.7% 1.50 0.74

Chinese Nurses: 70.9% 7.3% 1.69 1.23

Chinese Nurse Students: 47.5% 25.0% 1.98 1.19

Chinese Postgraduate Students: 40.5% 26.2% 2.21 1.32

All Chinese: 51.7% 21.7% 1.94 1.22

All European: 54. 8% 28.1% 1.75 1.06

Q6. Whether 'minor genetic disorders' would warrant disclosure?

'Strong no' 'yes or no' emedium' estandard deviation'

Chinese Geneticists Physicians: 23.8% 47.6% 3.43 1.12

Chinese Ethicists Philosophers: 27.3% 13.6% 3.05 1.53

Chinese Nurses: 29.1% 20.0% 3.29 147

Chinese Nurse Students: 26.8% 34.1% 3.10 1.45

Chinese Postgraduate Students: 23.8% 23.8% 2.67 1.36

All Chinese: 24.3% 25.5% 3.09 1.42

'strong yes' 'yes' emedium' estandard deviation':

All Europeans: 33.6% 30% 2.24 1.17

Q7. Whether prospective carriers of severe disorders such as ADPKD be given the chance to free testing? 'strong yes' 'yes' emedium' estandard deviation'

Chinese Geneticists Physicians: 38.1% 23.8% 2.19 1.21

Chinese Ethicists Philosophers: 86.4% 9.1% 1.27 0.88

Chinese Nurses: 59.3% 16.7% 1.83 1.22

Chinese Nurse Students: 39.0% 26.8% 2.20 1.27

Chinese Postgraduate Students: 59.5% 11.9% 1.90 1.28

All Chinese: 55.6% 17.8% 1.91 1.23

All Europeans: 63.0% 19.2% 1.61 0.93

Q8. Whether there would be a 'moral duty' of potential carriers to seek testing?

'strong yes' 'yes' emedium' estandard deviation'

Chinese Geneticists Physicians: 19.0% 42.9% 2.33 1.02

Chinese Ethicists Philosophers: 40.9% 22.7% 2.45 1.63

Chinese Nurses: 42.6% 29.6% 2.06 1.20

Chinese Nurse Students: 36.6% 24.4% 2.37 1.39

ChinesePostgraduate Students: 38.1% 19.0% 2.43 1.43

All Chinese: 37.2% 26.7% 2.29 1.34

All Europeans: 21.9% 19.9% 2.96 1.45

Note that 39% of eEuropeans disagreed, with estrong no' and eno' from Europeans: 20.5% and 18.5%.

Q9. Whether health care professionals should limit prenatal testing services to a number of severe disorders? 'strong no' eno' emedium' estandard deviation'

Chinese Geneticists Physicians: 23.8% 4.8% 3.10 1.34

Chinese Ethicists Philosophers: 40.9% 22.7% 3.73 1.39

Chinese Nurses: 58.5% 26.4% 4.30 1.08

Chinese Nurse Students: 58.5% 26.8% 4.27 1.16

ChinesePostgraduate Students: 19.0 % 21.4% 2.98 1.47

All Chinese: 43.0% 22.3% 3.77 1.39

All Europeans: 25.5% 23.4% 3.26 1.43

Q10. Should physicians genotype for drug metabolism so that patients get better medication and have less side-effects? 'Strong yes' 'yes' emedium' estandard deviation'

Chinese Geneticists Physicians: 23.8% 28.6% 2.48 1.17

Chinese Ethicists Philosophers: 63.6% 22.7% 1.50 0.74

Chinese Nurses: 76.4% 9.1% 1.44 0.90

Chinese Nurse Students: 78.0% 14.6% 1.34 0.76

ChinesePostgraduate Students: 81.0% 11.9% 1.26 0.59

All Chinese: 70.2% 14.9% 1.50 0.89

All Europeans: 29.2% 23.6% 2.59 1.40

Discussion

In response to whether there was a moral right or duty of the physician to contact members of Mrs. Han's family?, 30% of Chinese Geneticists and Genetic Physicians disagreed, revealing the traditional highly individualized relationship between physician and patient and confidential interaction in the traditional set of physician's and patient's ethics, still remain.

As to Whether or not there should be a legal duty of physicians to contact members of the family of the patient against that patient's will, we got less favorable response from Europeans. Some Chinese Geneticists Physicians, Chinese Ethicists and Philosophers showed that still have uncertainty about whether the physicians have a legal obligation to inform against Mrs. Han's will.

To whether there is a moral obligation of carriers for disclosure and for informing their relatives, the Chinese and the European favored very much the moral obligation of carriers for disclosure. Confidentiality still is one of the most important bioethical principles but its exclusive priority has to be balanced by considerations of preventing medical harm to fellow-humans.

Among the Chinese Geneticists and Genetic Physicians, we saw less moral obligation was considered for carriers for disclosure and for informing their relatives. If we compare the responses, strongly agree and agree, we see Chinese Ethicists Philosophers have paid more attention to the moral obligations of carriers than Chinese Geneticists Physicians do.

Chinese have a significant tendency to disclose both severe and minor genetic disorders. Chinese weighted preventing medical harm against keeping the Confidentiality principle. Europeans placed higher value on reducing the harm caused by going against the Confidentiality principle. A fourth of all participants probably wanted to decide case by case and disorder by disorder.

Chinese responses favor health care policy guaranteeing free genetic testing. Chinese responses voiced somewhat stronger support to seek genetic testing than Europeans. Europeans seems to favor towards a 'right, not to know' and eAutonomy'. Chinese were more in favor of not limiting prenatal genetic testing to a number of severe disorders.

The participants of Chinese as well as the various European groups, responded favorably to genotyping for drug metabolism. Chinese have not paid more attention to the potential discrimination as a result of disclosure of individual medical characteristics. The genetic services are not widely provided in China.

Conclusion

When Chinese recognize some hereditary genetic disorders affect other member of one's family, they would like to break the major bioethical principles of confidentiality and to protect others from harm. It would be beneficial, if carriers would know early about their status and get appropriate advice, access to genetic screening and the right to disclosure of genetic information.

The efforts of Medical Ethics education in China are not yet sufficient. There are strong temptations among health care professionals in favor of disclosure and of avoiding harm in China. We should pay more attention to the confidentiality related medical ethical education and propose guidelines on ethical issues in medical genetics in China.

We should balance the consequence carefully whenever we disclose the 'minor genetic disorders' or esever genetic disorders'. We should learn how to reduce the harm of the others also potential carriers. We should assist policy-makers, officials and health care professionals in China to ensure the disclosure of genetic information and the giving of genetic services in ethically acceptable ways.

We object to use a collectivist theory in the Chinese clinical genetics service. Collectivism thinks everything fundamental in ethics as derivedg from common values, social goals and cooperative virtues. Using the collectivist approach to balance the harm or interests conflict between all sides, a collectivist first examines the harm or interests of others, communities and society.

We should be able to clarify which 'genetic disorders' would warrant disclosure. Not like Polycystic Kidney Disease ADPKD, some severe genetic diseases can warrant disclosure. A national wide system of clinical genetics service has not been set up well in China, some clinical genetics department are carrying out without required qualifications and with no guarantee to clarify 'genetic disorders'.

The Chinese health care professionals or human geneticists are dealing with the cases individually. Issues of balancing confidentiality with disclosure, and duties to know or not to know still unresolved. There are still dangers of paternalism and collectivism. We need to develop an action guide and to establish an interdisciplinary curriculum. These are the urgent tasks of Chinese ELSI.

Acknowledgments

The work was funded in part by a grant of Deutsche Forschungsgemeinschaft [Sa 402/5-1]. I gratefully acknowledge Professors Sass Hans-Martin and Sven Froehlich of the Bochum Center for Medical Ethics, in the cooperation, analyzing and evaluating the data. I'm grateful to Dr. Stephen Lam, Professor Fan Guanrong, Dr. Ole Doering, Dr. Yali Cong, Prof. Kampits, Dr. Degen , Dr Nilius.


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