The Ethics of Genetics

by by Rohan Madamsetti

No one knows how to save Cameroon's rainforest. Since 2001, Joseph Matta, the Cameroonian Minister of Forestry, has been trying to lease 2,051,000 acres of the Ngoyla-Mintom rainforest to conservation groups for the low, low price of $1.6 million per year--about five dollars per acre. Conservation groups that rent land in order to preserve it, like Conservation International or the World Wildlife Fund, are used to paying much less.

But logging companies are willing to pay much more for the land, which doubtlessly holds large stands of valuable hardwoods. The Cameroon forestry department is in a fix: either rent out the land at prices far below its value to save it or lease it out for top dollar to the logging industry. The latter option would also generate jobs and improve the local infrastructure. But an unlikely idea may provide a compelling reason to save the rainforest: treating biodiversity as intellectual property.

The fundamental problem is that rainforest is dirt-cheap. The land itself is poor because all the nutrients in the soil are immediately taken up by plant and animal life. Once deforested, the land can't sustain farming or ranching unless more forest is cut down and burned to nourish the soil. What little topsoil is present is soon washed away by torrential rains during the wet season. The land is bad because its value lies in the life it supports.

Aside from the fact that the forest scrubs carbon from the air, effectively acting against the effects of global warming, rainforests happen to be the most lush of Earth's habitats, containing uncountable multitudes of life forms. At most, one percent of everything living in jungles worldwide has been identified, let alone characterized. When it comes to gene discovery and natural products research, the rainforest is a gold mine. Forty percent of all drugs used today are made by plants, animals and microorganisms found in nature. Examples include curare, used in heart surgery; quinine, the first anti-malarial discovered; and artemisinin, the hottest new drug to combat drug-resistant malaria.

Because biodiversity has never been quantified, there have never been good incentives for people, whether in large corporations or in indigenous tribes, to keep rainforest pristine and undeveloped. Already, more than 40 percent of the human genome has been patented by drug companies staking claims for their drug discovery efforts (and to prevent rivals from using 'their' data). Obnoxious as that may be, the ability to turn genetic information into cash might provide the proper incentives for corporations and countries to protect rainforest land.

Since no one invents genes, gene patenting is a strange idea. The legal grounds for the process have still not been worked out. By reserving the rights to a gene, a company can design drugs that target the gene, or use the gene to make industrial enzymes, without having to compete with rival firms. Often, billions of dollars are at stake. One of the major issues surrounding gene patents is biopiracy: the appropriation of biological knowledge from indigenous peoples or developing nations without adequate recompense. A decade ago, a challenge headed by the India-based Council for Scientific and Industrial Research led to the annulment of US patent rights over natural products taken from turmeric, a spice that has been used in cooking and traditional Indian medicine for centuries. (Curcumin, a compound found in the spice, is an anti-oxidant and also has putative anti-cancer properties.) While this may have been a victory against so-called biopirates, keeping such knowledge free means that companies and countries have little reason to protect the habitats these drugs come from.

A recent letter published in Nature Biotechnology entitled "Conserving biodiversity using patent law" outlines a novel strategy: list nature as co-inventor for natural products and invest one percent of all resulting proceeds in a global conservation fund dedicated to saving these resources. Drugs derived from cone snail venom have a conservatively estimated market value of $35 billion per year, while no more than $40 million per year has been allocated to save cone snail habitats. Destroying natural habitats like the rainforest comes down to destroying billions of dollars of potential earnings.

Clearly, much legislation needs to be done to manage gene patenting. But if done properly, perhaps the market can save what's left of the planet's resources, those which have not yet been ravaged in its name.
Harvard Professor George Church has made a career out of being a maverick. A geneticist who has dabbled in everything from genome sequencing to making synthetic organisms, Church's most recent project is the most controversial yet: he wants to sequence your genome, take your measurements, then put it all up--along with your name--on the internet for the public to see. This is the Personal Genome Project, and it might revolutionize patient care as well as our very understanding of the human race, albeit at the small cost of driving everyone's insurance premiums through the roof.

The project is still in its first stages. So far, 10 people associated with the program have had their genomes sequenced, and beginning this year, volunteers from the general public will enroll in the program after going through a rigorous consent process. As a collaborative effort between geneticists and the public, the Personal Genome Project is as much a social experiment as a scientific one.

Scientists like public information. The institution of science depends on professionals openly presenting data for peer review. Open access means that science moves faster. Church wants to take this philosophy to the next level by turning all of humanity into a dataset. It is true that the Personal Genome Project might violate the long-sacred rule of doctor-patient confidentiality by putting your medical records on the internet. But being able to compare your genome and records to everyone else's will provide unprecedented insights into the history and makeup of the human race.
For one, if taken to completion, the project could theoretically generate a complete genealogy for everyone on the planet, saving thousands of dollars in Mastercard purchases for the father and son who research their roots in Norway only to find out that they're Swedish.

As an added bonus, the enormity of the data also means that it can track the evolution and history of humanity without relying on the distortions of historical record (case in point: the kid is not my son).

The most pressing reason for the project, however, is that it could make it easier to spot the potential for certain diseases. There are only a handful of diseases--cystic fibrosis, sickle cell anemia and Huntington's disease among them--for which having a specific gene means that you will be affected. Usually, it's a numbers game: the effect of a gene depends on thousands of other genes, as well as environment and chance. Putting medical records and names to genomes puts a face to the trillions of nucleotides that collectively code for humanity; it allows scientists to see what happens when you put genes in action. The upshot is that doctors will be able to tailor their prescriptions and diagnoses based on your genome, opening up an era of personalized medicine.

That said, insurance underwriters everywhere will doubtlessly try to use the public data to cheat clients. It's foolish to think that insurers, who make money by insuring low-risk individuals, would ever want to insure someone who has an 80 percent chance of developing heart disease, or that an employer would want to hire someone with the gene for Huntington's disease, knowing that in 10 years he will need full-time medical care. The New York Times recently reported on the increased incidence of people who hide the results of DNA tests from their doctors and their insurance, terrified that the knowledge that they are more susceptible to cancer or lung disease might raise their premiums or cause a denial of coverage. Last year, by a vote of 420 to three, the House of Representatives passed the Genetic Information Nondiscrimination Act, which intends to protect Americans from discrimination by employers or insurers based on genetic test results.

The Personal Genome project is an excellent idea, but it is not going to be stomached by a public used to keeping information that could be used against them as private and secure as possible. But it would be a complete shame if we missed out on the world's biggest chance to understand our roots and the causes of genetic disease.
It is important that anti-genetic discrimination legislation pass soon to protect the genetically vulnerable, because the insurance risks are far outweighed by the scientific and medical benefits.

The kid is ROHAN MADDAMSETTI B'08's son.