| 摘要: | The unprecedented rate of discovery and application of medical genetics requires us to pause and ask if humanity as a species is well served or compromised by this development. Newborn screening tests practiced in developed countries, though beneficial, raise questions of ownership, identity, confidentiality and disclosure or results. Prenatal genetic testing, widely available, but not mandatory, creates pressure on physicians to offer and for patients to undergo them. A new, bizarre notion of 'responsible parenthood' means to give birth only to children who are without genetic abnormalities and to abort all others. Most disturbingly, medical genetics’ goal of eliminating severe disorders has silently morphed into a collective evolutionary "imperative" driven by an ideology of creating the perfect human specimen, and by default appropriating exclusive rights to the production and control of human life. Yet, history provides us with numerous examples to remind us that a prerequisite "to being human, and to be worthy of life" is not synonymous with a state of biological perfection. In addition, human diversity may be the secret of humankind's success. Without diversity, there would be no effective selection. We must have a balanced ethical debate. This can happen only after scientists, physicians and all people become educated about the realities of genetics and willfully work at setting limits on these pursuits. Unfortunately, current normative bioethics does not provide a satisfactory solution for a unique, global approach. For the new 'genethics', we need to be mindful of bioethical, legal, psychological and social implications of genetic research and its applications. This must inform genetic counselling, which is critical for beneficial interventions, and it requires informed geneticists with imagination and intuition. The power of human genetics over the future of humankind is unprecedented. Imperceptibly, the range of genetic interventions is increasing without full consideration to benefits, harms, future consequences or responsibility. It is imperative to embrace genetic responsibility for maintenance of diversity and richness of human life. |
