医学样本提供者的知情权与专利收益分享权——基因医学研究中一个亟待解决的重要问题

The medical samples providers' rights to know and to share profits of patent:a burning issue in gene medical research

基因医学研究的前提必须是充分信息、自愿同意和收益分享,而决不能以医学治疗的名义,以科学研究的名义或者以故意隐瞒的方式。政府有必要通过立法,保证医学样本提供者在拥有充分信息的条件下,自愿行使知情同意权和知情选择权。作为提供医学样本的补偿,他们有理由获得相关的专利收益分享权。具体的分享比例应该在平等互利的基础上,按照规定、惯例或者政府认可的其他协商方式最终确定。

The premises of gene medical research are sufficient information, voluntary consent and profits sharing, not under the guise of medical cure, scientific research or the way of concealing deliberately. It is essential for the government to ensure the medical samples providers exercise the rights of consent and of option voluntarily with sufficient information. They are due for the interrelated rights to share profits of patent as compensation. The special proportion is in accordance with regulations, convention, or other ways that government acceptance on the basis of equality and mutual benefit.