New rules for DNA data banks are needed to preserve privacyand freedom while allowing medical and epidemiological use ofgenetic information, George Annas, professor of health law atBoston University School of Medicine, wrote in the Journal ofthe American Medical Association.

"Current policies and practices governing the privacy andconfidentiality of medical information are woefullyinadequate," Annas wrote. He proposed that no DNA data bankshould be established without public notice, a privacy impactstatement, and proof that the data bank is necessary to achievean important medical or societal goal. He also suggested thatlinks to other computerized information systems should beprohibited.

Medical information on people has traditionally been collectedmainly by health insurance companies. But even if health-carereform abolishes health-based underwriting and pre-existingcondition clauses, gene banks will still continue to endangerprivacy and liberty, Dianne Bartels, associate director of theCenter for Biomedical Ethics at the University of Minnesota,told BioWorld.

"The insurance industry can review any record prior toauthorizing admission to a hospital," said Bartels. Managed care,the Clinton model for cost containment under health-carereform, "implies that a lot of people are reviewing records andmaking decisions about appropriateness." Such informationcould be used to discriminate against certain patients.

We've seen vicious discrimination based on disease category,especially HIV and predisposition for mental disease, Annastold BioWorld. "Supposing you had a gene for early onset ofAlzheimer's disease? An employer might not want to train youif he thought your productive years were limited."

Life insurance companies also might discriminate, and peoplecould be stigmatized on the basis of genetic make-up. In 1972,presidential candidate George McGovern was forced to dumprunning mate Thomas Eagleton after columnist Jack Andersonrevealed that Eagleton had undergone electro-shock therapy."That's a wonderful example of the dangers of stigma," saidBartels.

Some people prefer to remain ignorant of their genetic status,said Annas, particularly in the case of a devastating diseasethat occurs in the prime of life, for which there is no treatment.For example, 90 percent of those at risk for Huntington'sdisease reject testing.

"We can see proposals coming to test everybody," said Annas."We do have a data base for all newborns right now.Presumably we wouldn't use them for this, but there is nothingto prevent public-health authorities or others from using(blood samples taken to test for phenylhetonuria to look foranything they want. They use them to look for HIV."

Rules for protecting data banks could eliminate opportunities tocollect population data and follow the natural history of geneticdiseases, Annas told BioWorld.

But Leroy Hood, professor and chairman of the Department ofMolecular Biotechnology, University of Washington, saidcollecting useful data should be reasonably easy, even if testingis anonymous.

"We do blind, placebo-controlled tests, and the data is analyzedby investigators who don't know who is getting what," he said."In the same vein, you could code people without having theindividual be known. ... If you did it right, you could get justabout everything you needed without revealing the identity."

-- David C. Holzman Washington Editor

(c) 1997 American Health Consultants. All rights reserved.