I. Yours to Own?

If you could find out what's in your DNA, would you? Could you? The cost of sequencing the human genome may fall exponentially in the next few years. The total public contribution to the Human Genome Project was almost $3 billion. Currently, it costs $10 million to sequence the 3 billion base pairs found in the human genome. The National Human Genome Research Institute awarded grants last fall seeking to drive the cost down to $100,000 in the near term. Harvard Medical School upped the ante this summer, claiming it could reduce the cost to $1,000, dangling the possibility of unpacking your "personal genome" -- cheap enough to permit someone to have his or her own genes sequenced. In terms of health care costs, decoding your DNA makes sense. If you amortize the $1,000 over an average of 50 adult years (I'm not getting into the issue of gene typing infants and children without their consent), that is about $20 per year. Is it worth it?

Your personal genome map could identify an unsuspected, rare, inherited disease. You could engage in preventative health care -- that is, change your behavior or environmental factors to reduce the risk of getting a disease for which you have a mutation. It might be useful in deciding whether to have children, if both parents carry a defective gene. Along with the utility of a personal genome map, there are a host of ethical and social issues with genetic sequencing. But, assuming that someone wants to sequence his or her personal genome, can he or she do so? Not if the biotech industrial complex has its way.

In fact, many genes associated with disease have already been patented, granting the patent holders (primarily biotech companies, researchers and universities) exclusive rights to identify, diagnose and treat the genetically-linked disease. Although the explicit purpose of patents is to encourage information sharing and research, the opposite is the case when it comes to human biological materials.

Case in point: Myriad Genetics owns the patents to BRCA1 and BRCA2, the two genetic mutations associated with breast cancer. If a woman wants to find out if she is at risk, she must use Myriad's test, which costs nearly $3,000. Even if she could find a cheaper, better test elsewhere, she cannot get it. Who would gamble on a courtroom battle with Myriad's hard-hitting lawyers?

In Europe, researchers and clinics sued against Myriad's patents, because they had developed more accurate, cheaper ways of testing. They won, and Myriad lost one of its European patents. But not so in the United States; you do not own your genome, if someone made it to the patent office first. That $1,000 sequencing cost does not account for fees or royalties claimed by patent holders for various parts of the human genome. The most exclusive part of you -- your DNA -- may not be yours to own, or even uncover.

II. The Cost of Knowing

What is the benefit of decoding your personal genome? It could enable you (in consultation with your health care provider and genetic counselor, of course) to:

• Discover whether you have inherited a genetic predisposition for both common and rare, inherited conditions;
  
• Assess how likely you are to manifest a particular genetic disease;
  
• Engage in preventative medicine -- that is, lower your risk of developing disease by eliminating or reducing contributing environmental or behavioral factors; and
  
• Avoid drugs that might not work for you, or might even harm you.