With the plethora of technological advances that define our recent history, the science community, government, and general population face difficult questions about the ethics of studying the human genome. Moreover, increasing information on genetic composition leads to increasing responsibility.
This, as well as questions surrounding gene patenting and genetic privacy, were the topics of a conference held Wednesday evening in Dowling Hall, where four panelists discussed the technology behind gene sequencing and the links between science, technology, law, and public policy.
"How can you patent a gene? It's so personal; it's a part of your body," sophomore Katheryne Hughs asked.
A gene sequence is not something that has been invented, but rather is discovered and exists in all creatures on Earth. However, researchers have already attempted to obtain patents for their genetic finds. US patent laws state that an invention or discovery can be patented as long as it meets official patent criteria, according to Dr. Sheldon Krimsky, a Tufts professor of Urban and Environmental Policy.
The issue of genetic privacy was tackled by Dr. Norman Daniels, a professor of medical ethics at Tufts, and Boston University professor Dr. George Annas. "I don't believe that anyone should open your DNA diary without your consent," Annas said.
Prejudices by insurance companies that know a person is genetically programmed to have a disorder or disease was another topic of debate. Should an insurance company be allowed to refuse coverage to a person because he or she could develop diabetes, Huntington's disease, or any other hereditary disease? This is already happening in England, where insurance companies will soon be allowed to use results from genetic testing to increase premiums or refuse coverage to persons born with genes that could lead to fatal conditions.
Students who attended the conference said they came because they were concerned about how these issues will play out in an era dominated by technological advances. "It is worthwhile knowing about this stuff, because it affects every person in our generation," said sophomore Danielle Perrin. She cited the movie Gattaca and its discussion of eugenics and the ideal child as an example of how she has encountered this debate.
Tufts Chemistry Professor Dr. David Walt discussed the utility and benefits of gene sequencing. He feels that it will mark a step forward in healthcare around the world and could in fact decrease the price of drugs. Each drug will be a "designer treatment" for each patient.
However, other panelists disagreed with this statement, citing past occurrences in which new and better drugs entered the market, only to wind up costing more.
Daniels offered a radically different perspective when he asked the audience to consider socio-economic effects on healthy living, healthcare, and public policy on health. A great deal of progress has been made in nutrition, sanitation, and life styles during the last century, and this has increased life expectancy more than any drug. Daniels suggested that maybe improving nutrition education and sanitation around the world is a better weapon against disease than innovative technology.
During the question and answer session, audience members probed further into the issue of gene patenting. Many other countries, especially third world countries, have opposed gene sequence patenting. US patent laws, however, make it relatively easy to obtain a patent for a gene sequence. The most difficult part is finding someone who understands the art of gene sequencing enough to demonstrate the discovery's utility.
The event was sponsored by TuftScope, the new journal of health, ethics, and policy on campus; the Boston University Bioethics Society; the Tufts Biology Department; the Tufts Philosophy Department; and the Tufts Political Science Department.
