Case Study Who owns my genes: Ethical implications of patenting genes? Mike Burdsall, Danville Community High School July 15, 2009

Who owns your genes?

Erich Karl Fuchs' first AIDS test came back negative. He thought that there was no way that this could be correct due to the fact that he knew he had been exposed to the virus multiple times. Therefore, he repeated the test over and over, with each test being negative for the virus. So Mr. Fuchs contacted several different researchers to ask them to study him and figure out what was going on. It took over six years for Mr. Fuchs to convince someone to do the research, but finally the Aaron Diamond AIDS Research Center in New York took his case.

The result was amazing because the researchers could not get the HIV virus into his cells. The researchers were able to use Mr. Fuchs and another man, Steve Crohn, who were both immune to the virus, and they determined that they both had a gene which results in a blocked doorway into white blood cells. The researchers were able to determine the location of the gene and discovered how it worked. The Aaron Diamond AIDS Research Center received a patent for a test to identify people who have the HIV resistant gene. This company can now charge anyone to use this test and could make huge profits.

But what should be done about Mr. Fuchs and the other man, Steve Crohn? It was their blood that allowed the company to find the gene, and they helped the company gain publicity for the discovery. "I just wanted to do something good," Mr. Fuchs said, "but once money came into the picture, why not have it be shared with me?" The courts have heard some cases from patients but have found that the patients do not have any rights to their genes. "The risk," said Professor Greely of Stanford, "is that patients will refuse to participate in genetic research, fearing that they will be exploited. You don't want research subjects to feel cheated and embittered and betrayed," he said. "In the long run, for research with human subjects to survive, those human subjects have to feel that they've been treated fairly."

You may be asking how someone can patent a gene. The law provides a patent for any person who invents or discovers any new and useful composition of matter. So, if a scientist can isolate your DNA in pure form, then they have a composition of matter in a small test tube. Once they have the patent for that gene, these exclusive companies may inhibit research. If another company wants to use that gene, they would have to pay the company that holds the patent to do the research. In some cases, that will prevent further research on those genes or diseases. Questions to consider:

Do you think the two men whose blood was used to discover the gene should get paid?

Would you volunteer your blood to help with some type of genetic research? Explain why or why not:

What laws or regulations should be put into place regarding patenting genes?

Ethical Questions:

Should anyone be allowed to patent a gene?

Who should profit from any gene patents?

Selected References

Cho, Mildred K. and Merz, Jon F. (1997). “Patients and Patents.” Nature, 390:221. Nov. 20.

Kolata, Gina. “A Special Report: Who Owns Your Genes?” The New York Times 15 May 2000 http://www.nytimes.com/2000/05/15/us/sharing-of-profits-is-debated-as-the-value-of-tissue- rises.html?pagewanted=1

Ramsey, William S. “WHO OWNS YOUR GENES?” Patent Article. http://www.williamramseylaw.com/pages/Pwhoowns.html Ethical Analysis:

Main Arguments in favor of patenting genes:

The principle of beneficence (do good) should allow the researchers to patent these genes because this can motivate them to do the research. If they know the work will yield profits and can be “theirs” for awhile. The Aaron Diamond AIDS Research Center was able to invent a test to identify people who have the HIV resistant gene.

In considering the principle of justice, the individuals volunteer and know going in that they will not receive compensation if there are new discoveries from the research. In the end it is the researchers who do the work and make the discoveries.

Arguments against patenting genes:

The principle of autonomy (respect) may have been violated in different ways. Mr. Fuchs had to seek out a company that would use him for research and then the company just used him for their own profit. The courts’ rulings do not respect the rights of the individuals to their own genes.

In considering the principle of non-maleficence (do not harm), the companies that patient a gene could prevent other companies from doing research on diseases located on that gene. Consequently, people could be harmed because the disease they have may not get a treatment or cure.

Applications:

This case study can be extended upon by:

 Having each student research the number of genes that have been patented and the companies who have the most patents. In addition, each student will select a gene and research what traits or diseases are on that gene. Once they have completed their research we will have class discussion on the ethical implications of patents on those genes.

Post Script for teachers:

This case is based on the story of Erich Karl Fuchs, who had his first aids test in 1988. The Aaron Diamond AIDS Research Center in New York took his case in 1994.