Insuring Your Genes

DNA is often perceived as offering the key to opening many of life's mysteries. Whether it be in popular TV or real-life crime cases, DNA and an individual's genetic makeup has become the defining player in uncovering the truth. The US Department of Justice states in their DNA Policy Book, "DNA technology is increasingly vital to ensuring accuracy and fairness in the criminal justice system.  DNA can be used to identify criminals with incredible accuracy when biological evidence exists, and DNA can be used to clear suspects and exonerate persons mistakenly accused or convicted of crimes."

Medicine is also awaiting the genetic revolution where diseases can be diagnosed earlier and drug regimes and treatment can be tailored to one's unique genetic makeup to maximize effect while minimizing complications. Herceptin and Gleevac are expensive cancer drugs that only work in certain patients, and thus patients must be screened prior to administration. It can also forewarn you regarding your predisposition to a specific debilitating disease.

A recent National Geographic initiative - the Genographic Project - sought to enable people all over the world to trace back their ancestry to their prehistoric place of origin. This landmark study has examined 78,590 individuals and offered incredible insight into modern human genetic diversity and the spread of human civilizations around the world.

The X Prize foundation - the same organization that ignited the civilian enterprise into space - has also offered a $10M prize to the first team to decode the entire DNA profile of 100 people within ten days. With the original Human Genome Project costing several billion dollars, this seems daunting, but with technology attempting to bring the cost of sequencing to about $1,000, the benefits are apparent.

Therefore, why wouldn't you want your DNA profile to be sequenced?

Britain is becoming a world leader in the sequencing of individual's genetic makeup. Almost 4.1M people, or 7% of the population, has their profile entered into a national database set up in 1995 (Most other EU countries have no more than 100,000 profiles in their databases). In America, the federal DNA databank holds 4.6M profiles, or 1.5% of the population. However, in both countries, these profiles were collected from anyone who was arrested for a "recordable offence" in Britain or convicted of a crime in the US (which can be collected on arrest and expunged if acquitted).

Also, thanks to popular TV shows like CSI, too much faith is placed in its promises. In the criminal justice realm, as pointed out in a recent Economist article on civil liberties, "DNA is less reliable as a crime detection tool than most people think. Although it almost never provides a false 'negative' reading, it can produce false 'positives'...A person can transfer DNA to a place, or a weapon, that he (or she) has never seen or touched."

Finally, major issues arise involving genetic privacy. In an environment where the falling price and growing reach of DNA-technology has enabled researchers to isolate, just over the past few months, dozens of genetic variations that are strongly associated with coronary heart disease, rheumatoid arthritis, multiple sclerosis, Crohn's disease, high blood pressure, and several mental disorders, the cost implications to the health care system is serious. While diagnosing predisposition to these costly disease early through DNA profiling will save lives and money, they are just predispositions - there is no guarantee of suffering from the disease as health is a complex web of genetics, environment, and individual habits. Therefore, many are fearful of releasing their genetic profile in fear that they will be left without that most precious security blanket - health insurance.

In another Economist article (yes, there is a trend, I really like the Economist) stated the issue most interestingly:

"As medieval European Christians feared to have their souls bared for public examination, lest they be suspected of heresy, so modern, secular Westerners fear the baring of the nearest thing to their individual essences that science has come up with: their genomes. If that happens, some of them suspect, they risk being consigned to the secular equivalent of limbo—the uninsured. For their part, the insurance companies have an equal and opposite fear—that they will be put out of business. They worry that those who think they have nothing, genetically speaking, to be concerned about will stop paying. They will then be left to deal only with those who have reason to believe they will need to make a claim at some time."

The fear is that genetic profiling will eliminate that favorite term of health economists - adverse selection - which keeps health insurance premiums reasonable for many people. Therefore, laws like the recent Genetic Information Non-discrimination Act (GINA) were proposed in Congress, having strong support by both parties and the president. In the short term, this law will be a boon to science - calming fears and enabling more people who were hesitant to enter research projects for fear that their profiles could be used against them later. In the long term, the effect on researchers and insurers is less clear, as there is less economic benefit of such studies. In the short term many fear that such legislation will cause people to "game" the system; those who test negative for serious and costly diseases will drop coverage, leaving insurers faced with covering only the most sick.

Whether this will happen is up for debate (with some evidence - long term insurance - indicating it is likely, while others - involving women diagnosed with the BRCA gene - don't). Nonetheless, as Joanne Armstrong, CMO of Aetna, say that personalized medicine centered around genetic profiling will be "evolutionary, not revolutionary". Stephen Cecchetti at Brandesis University believes insurers are cleaver enough (and have significant economic incentives) to  tease out the results implicitly through cleaver pricing schemes that force patients to reveal adverse genetic biases. As long as the genetic profiling is incomplete or prone to hacking or other measures to make the results public, insurers will be safe. However, "Once you have perfect information," he argues, "it will be the death of insurance, which depends on uncertainty and pooled risk". In an environment where individuals have a genetic score akin to your credit score, new methods of insurance will arise, either universal coverage as argued by Carol McCall of Humana or individual HSAs that bypass insurance altogether.

Nonetheless, the move towards genetic profiling and personalized medicine will have a tremendous effect on the future of the health care industry; one that will have serious ethical, economic, and scientific implication on all of society.

Comments

[Berci Meskó]

It's a fantastic article! It seems I have a new addition to my feedreader. :)