The Dangers of DNA Testing
DNA testing is in the news a lot these days, and not solely because of the saga of Anna Nicole Smith, whose burial was delayed amid a legal tussle over the paternity of her 5-month-old daughter, Daniellyn. The growing success in obtaining convictions by genetic matching (since the O.J. Simpson trial anyway) has made it the preferred identification technology for law enforcement, as well as by other federal agencies. The U.S. military requires every serviceman to give blood for future DNA analysis, presumably for body identification.
States are among the most aggressive users of DNA testing. The New Jersey Supreme Court recently upheld a Garden State law requiring DNA testing of all felons, with the results maintained in a state database and submitted to the FBI.
Other states that have initiated extensive DNA collection policies include Virginia and Arizona—the latter tests, collects, and stores the results not only from convicted felons but also from most people who are simply arrested for a felony. Florida is now considering collecting DNA from everyone convicted of a felony, as well as from those found guilty of certain misdemeanors.
Municipalities are climbing onto the DNA testing bandwagon, too. A blood bank in Seattle has begun collecting and analyzing DNA from donated blood without obtaining explicit permission, although donors may opt out. The program is funded by the U.S. military. To protect the privacy of donors, the Puget Sound blood bank labels the samples with codes instead of printed names. For the record, that's not a very secure strategy.
A little-noticed provision in the recently passed Violence Against Women Act may soon trigger the largest sweep of DNA information in this country. The Justice Dept. plans to collect DNA from anyone arrested or detained by federal agents. This will, by definition, include all illegal immigrants.
The increasingly widespread use of DNA testing opens a Pandora's Box of privacy issues. Technicians can extrapolate information about a person from the sample of their brother or son. In Houston last year, a man's conviction of rape was partially based on DNA evidence collected from his twin brother.
And the process isn't without its bizarre anomalies. For example, people who have received bone-marrow transplants can in certain cases match the DNA of a donor.
An aspect of DNA testing that could get ugly is its ability to confirm ethnic ancestry. There have been times in history when the availability of a foolproof test to determine racial composition could have been devastatingly employed.
Even if it doesn't go that far, a comprehensive DNA database could be used as a surrogate national identification system. Someday we may have to stand in a security line at an airport, waiting to get our cheeks swabbed.
The typical argument made by those advocating widespread DNA testing is that we already routinely take fingerprints from suspects, and that genetic fingerprinting is really just a higher-tech version of the same thing.
The problem with DNA however, is it's more than an identification mechanism—it's also a predictor of future health issues. From a privacy perspective, it's like the difference between ID-checking a driver's license and looking through your whole wallet.
Carriers who have the potential to pass on single-gene or Mendelian disorders like cystic fibrosis, sickle-cell anemia, and Tay-Sachs disease can be positively identified by the presence of the gene. If you and your partner both have the gene, then your children have a 25% chance of getting the disease. DNA can also tell a lot about the body's ability to absorb vitamins and nutrients, and reveal an inherited tendency towards heart disease or diabetes.
And the analytic information derivable from DNA is getting better all of the time. It's conceivable that DNA analysis may soon become the preeminent predictor of future health.
As Hamlet said, "Aye, there's the rub.
" Once DNA is collected and stored, future technologies can be retroactively applied against the genetic material, causing unforeseen privacy problems for many years to come.
The Big Questions
Unfortunately, genetic laws in the U.S. are in no better state than privacy laws in general. It's clear that we need legal guidelines, perhaps not to stop the testing, but certainly to protect against institutional use or misuse.
The questions that need to be answered are:
• Who should have access to our genetic records?
• What groups, if any, should be forced to have their DNA tested?
• What about the disposition of the data? Will the stored genetic material of armed-service members be destroyed after they're discharged?
• Should employers, the government, and insurance companies be able to use your DNA information?
All or Nothing
There seems to be a fairness issue at stake here. When only a percentage of the population is tested, they're at a disadvantage to others who aren't.
Given the trend towards mandatory DNA sampling at arrest time, it would seem that DNA testing is well on the road to being perceived by many Americans as punitive, or at least class-divisive—certainly unrepresentative. We could easily end up with a national DNA database comprised solely of active-duty military, illegal immigrants, and people who have been arrested for a felony charge.
Congressional support is growing for a bill that would prevent employers and insurers from using the results of DNA testing. Passage of the bill, which is supported by IBM (IBM) and Affymetrix (AFFX), would provide a major protection for consumers from misuse of genetic information.
So I have a modest proposal. How about testing everyone—every immigrant, every resident alien, every citizen? Everyone or no one. Make submitting to a DNA swab a condition of driver's license renewal or collecting social security or getting a passport.
Find a trustworthy agency to safeguard the information (harder than it sounds), and build a body of privacy law to protect against abuse. As a side note, a comprehensive national genetic database would be useful to the advancement of medicine and health-related public policy.
I don't like the idea of such a database, but I would vastly prefer a universal American DNA registration system to the alternative: ad hoc, unrepresentative genetic banks, managed by the institutionally unregulated and distilled from the blood of those who are powerless to protest their inclusion.
Holtzman is the author of the book Privacy Lost: How Technology is Endangering Your Privacy (www.privacylostbook.com ), published by Wiley in September.