The Genome Doctor
The director of the National Human Genome Research Institute answers questions about the morality of his work
Francis Collins | posted 10/01/2001 12:00AM

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I have much more trouble, though, with patenting genes whose function is unknown or highly uncertain. That can lead to people claiming large territories of the genome, hoping that sooner or later somebody else will figure out what those genes do, and then a license will have to be granted and payments will have to be made. That could be exactly the wrong thing to do for the public benefit. The position of the National Institutes of Health, with which I agree, is that we should set the utility standard very high before allowing a patent on a gene. Unfortunately, the bar has not been set as high as we would like.
You're not a fan of germline therapy that would allow altering of genes in sperm or eggs in order to prevent passing on of diseases or disabilities to future generations. What's wrong with it?
At the moment, it's not safe. The only way we might currently try it would be likely to change not only the misspelling in the DNA that you want to fix, but also some other places in the genome would also get a little bit scrambled. The notion of altering DNA that's going to get passed to future generations, and is of uncertain consequence, does not measure up to most people's standards of ethical acceptability. It certainly doesn't measure up to mine.
Are safety issues also the problem that you have with cloning?
I have two problems with cloning. The most apparent one is the safety concern. There will be carnage of unimaginable consequence if we attempt to clone human beings right now. Everything we know about every animal species for which cloning has been attempted indicates that only a tiny percentage give rise to live births that survive for more than a few days. Most of them result in miscarriages, birth defects, and newborn deaths of uncertain cause. Puzzling and troubling outcomes occur when you try to convince DNA from a differentiated cell that it's actually an embryo again. It is unacceptable, given all of that data, to contemplate the cloning of a human being at the present time.
You once described yourself as "intensely conflicted" in regard to stem-cell research. What's the cause of this conflictedness?
But of course, even if the safety issues were solved, would human reproductive cloning be an acceptable practice? It wouldn't be for me. I believe that human beings have come into this world by having a mother and a father. To undertake a different pathway of creating a human being is a profound departure from the normal state of things. I have yet to hear a compelling argument for why we need to do that.
It is a classic example of a collision between two very important principles. One is the sanctity of human life and the other is our strong mandate as human beings to alleviate suffering and to treat terrible diseases like diabetes, Parkinson's, and spinal-cord injury. The very promising embryonic stem-cell research might potentially provide remarkable cures for those disorders. We don't know that, but it might. And at the same time, many people feel, I think justifiably, this type of research is taking liberties with the notion of the sanctity of human life, by manipulating cells derived from a human embryo.
Are there any other scientific decisions that trouble you because of their ethical implications?
We should all be concerned about the possible need to define boundaries on genetic testing. In some instances, it is enormously beneficial that we have tests available to predict future illness.