摘要
Who, if anyone, should own the information contained in your genes? Humans have thousands of genes contained in 23 pairs of chromosomes. These genes create the blueprint for our biology and determine who we are, what we look like, and, in some cases, what diseases we will get. There is a lot at stake, both medically and financially, in deciding who owns this knowledge.
The burgeoning understanding of the genetic code has spawned the field of genomics, which holds the prospect of tailoring medical care to each person’s individual makeup. This new area of medicine has the potential to save countless lives. It has already led to clinical tests to assess the risk of various serious diseases, including several forms of cancer.
The success of genomics is a result of the combined efforts of university research, which has generated many of the basic discoveries, and private corporations, which have developed commercial applications. It is, in effect, a team effort that has produced breakthroughs in many areas of medicine. The tests that are available to clinicians today have flowed from the contributions of both efforts.
Whereas academia and industry form the partnership that moves genetic medicine forward, their modes of operation differ quite a bit. In one important way, this difference has dramatic legal implications—the protection granted to the intellectual property that underpins their efforts, in other words, ownership rights to the genetic information involved. Academia relies on the wide dissemination of knowledge; private industry relies, to a greater extent, on the exclusive use of knowledge.
Most companies that commercialize genetic technologies seek patent protection for the information on which they rely. This means that for a period of 20 years, they effectively own it. Many academic researchers, as well as some clinicians, claim that this exclusive use inhibits their ability to further advance knowledge or to fully translate discoveries into benefits for patients. These conflicting goals have created a considerable legal controversy that remains unresolved. A lawsuit filed in May by a group of plaintiffs led by the American Civil Liberties Union (ACLU) seeks to produce greater clarity by restricting gene patent rights.