Abstract 摘要

The solutions or resolutions of ethical issues in genetic screening and testing as well as in other fields are shaped by a framework of ethical principles. Now the three (or four) basic ethical principles, i.e. beneficence (or plus nonmaleficence), autonomy and justice which were developed in a medical context of Judeo-Christian culture have been widely accepted in the world as well as in some countries with non-Judeo-Christian culture. So it can be said that these principles form a common framework in the international community, and more or less became universal principles in the world. However, when applying these principles to address ethical issues in developing countries there are some tensions between the principles and traditional values emerging there.

Each belief system or value system outlines an ideal world in which people behave according to the norms shaped by the system. Belief systems or value systems in different cultures outline different ideal worlds that are overlapping, but never identical. The basic ethical principles were developed mainly in a personal medical relationship between physicians and patients under an individualism-oriented and right-focused socio-political philosophy. In the most of developing countries whose cultural traditions are non-Judeo-Christian the individualistic orientation and right approach are underdeveloped and emphasis is put more on collectives (family, community, society) and duties, and their priority of values and understanding of these ethical principles are different from their developed counterparts.

Cases show that 1) for many Chinese intellectuals as well as many ordinary Chinese, his/her own action should not be only out of his/her own interests, or cannot be justified ethically only by the interests the action would bring to him/herself. In some cases, they are even willing to make sacrifice to save the other's life or release the other's suffering. 2) As shows in clinical settings a patient's decision is rarely an individual personal decision, but usually a family decision. Sometimes, the community is also involved in the decision. So we can say that in any medical decision there are individual, personal elements as well as collective elements (family, community). When there is a conflict between individual and community, no rule-neither individualistic rule which prescribes that the priority should be always put to the individual, nor communitarian rule which prescribes that the priority should be always put to the community- is universally applicable. What the priority is put to should be judged case by case.

Any action of using genetic knowledge is predicated on the presumptions of these dichotomies, such as nature vs. nurture, biological determinism vs. social determinism. With the development of human genetics, innatism and biological determinism seem to prevail. However, except a few human traits, many of them are the result of interaction between multi-genes and environment. For some of them, such as mentality, the role of socio-cultural environment cannot be ignorable.

Genetic screening and testing should be voluntary in general according to the principle of autonomy or respect. However, "voluntary" means informed choice. Screening newborns can be compulsory when treatment is available for those affected by genetic disorders, because both parents and medical professionals have the obligation to protect the health and life of newborns; testing the sex of the fetus, unrelated to genetic diseases should be prohibited. The potential benefits of genetic screening and testing must outweigh the potential harm, risks or costs according to the principle of beneficence. If genetic screening involves a group or some groups the benefits and costs should be distributed fairly intra-group or inter-groups according to the principle of justice. Genetic screening and testing should be restricted to conditions that seriuously affect the health of the individual and may be particularly appropriate to those conditions that result in death before adulthood; it is inappropriate to screen for conditions that do not seriously affect health and/or which fall within the normal range of human traits; and it will be appropriate to screen for late-onset diseases for which preventive treatment is available, but it is unlikely to be appropriate for any testing to be done before adulthood in most cases. All clinically relevant genetic information to patients and family members after screening or testing should be fully disclosed to them, except two kinds of cases: XY genotype in a female, and a woman's husband being not the biological father of her child, and the disclosure of genetic information to patients and family members should be followed counselling and education according to the principles of beneficence and autonomy. Counselling should be non-directive according the principle of autonomy. However, non-directive counselling does not mean geneticists should take a passive attitude to their clients. On the contrary, they should help their clients to know all relevant facts, understand their implications to them and their family, and encourage them to consider the facts in the context of their beliefs and values according to the principles of beneficence and autonomy. Efforts should be made against genetic discrimination in insurance and employment, delivery of genetic services, and eugenics abuse. Any action the state may take to protect collective "gene pool", or "genetic cleansing", or positive eugenics should be prevented. The state or society has the responsibility to provide genetic services including genetic screening and testing which are accessible, quality-guaranteed, effective, and affordable to its people. However, in the developing countries with rare resources it can only be achieved gradually. They should have a programme to develop genetic services step by step but steadily, insistently, and progressively.

The following suggestion was discussed either: Somatic gene therapy is permissible, regulated as an experimental therapy. Its use for enhancement purposes may be widely prohibited, but it should not be categorically disapproved as unethical in all imaginable circumstances. Germline gene therapy is indefensible at present, but it should not be categorically disapproved. The use of germline gene therapy for enhancement purposes should be categorically prohibited.