Police departments, insurance companies, and HMOs want access to DNA, the genetic code at the heart of every living cell. Even though we are far from decoding this genetic patchwork, the question of whom should have access to DNA has entered public debate.

    DNA data banks exist everywhere today. A majority of U.S. states have established DNA data banks to track violent criminals. For example, local police officers and FBI agents tap into banks like the state of Virginia’s, which houses more than 100,000 DNA samples from the state’s convicted felons. The Department of Defense stores blood and saliva from all members of the military in the nation’s single largest DNA data bank. Indeed, the data banks serve many purposes: they enable law enforcers to identify suspects, the military to identify missing personnel, and researchers to find the causes and treatments for dozens of genetic diseases.

    Screening samples of DNA for identifiable characteristics allows criminal investigators to solve cases without suspects, to find and eliminate suspects more efficiently, and to exonerate the falsely accused. The same technology allows military officials to identify soldiers’ remains so well that it is likely future wars will not yield any unknown soldiers.

    These data banks and the samples stored therein can, however, do far more than identify criminals and war dead. For this reason the privacy of samples stored in these data banks has become a major legal, political, ethical, and moral issue. Technicians extract the DNA profiles, or samples, stored in these law enforcement data banks from “non-coding” DNA regions—areas consisting of patterns useful for identification of a person but otherwise containing no genes. As a result, profile specimens say nothing about genes which encode an individual’s predisposition to develop particular diseases and traits. Yet, the samples from which profiles come contain genes which code for such characteristics, and therefore carry information which reflect a person’s genetic traits and, perhaps, future health and well-being. “The use of DNA profiles to confirm identity is not the cause for concern,” said Rita Calvo, a lecturer in genetics at Cornell, “the tissues the profiles came from are the worry.”

    Each year, medical centers around the country deposit thousands of human tissue samples into vast research archives. Such archives may make sensitive genetic information about the current and future health of countless individuals—not just convicted felons—available to those with the resources and inclination to get at it. People with a variety of motives can use individuals’ DNA profiles for much more than simple identification. As genetic screening becomes more advanced, researchers, insurance companies, and banks will seek access to it in order to glean information on individuals’ health and future for their own private interests.

    Some believe the Human Genome Project, an ongoing international research effort to identify every gene that humans possess, may actually entice people to seek access to hereditary information about others. DNA comparisons of members of high risk families, for example, can point to patterns of inheritance and allow researchers to zero in on genes implicated in inherited diseases. As research on hereditary causes of disease and behavior continues to advance, large DNA depositories may continue to yield vast social benefits which come from understanding the genetic causes of complex diseases and conditions, from cancer to obesity.

    Still, while prior knowledge of such conditions can result in treatments and even cures for some conditions, such knowledge is a double-edged sword. Publicly available knowledge of people’s genetic propensities might lead to discrimination against people who don’t actually display certain characteristics, but carry the “wrong” genes. Critics point to abuses which have already happened. In the early 1970s, for example, some insurers denied coverage or hiked rates for African Americans who carried the gene for sickle cell anemia. These people were not sick and, in many cases, might have never gotten sick. They still had to pay higher insurance rates (or go uninsured) simply because of their genes. Insurance companies also discriminated against people with the gene for Huntington’s disease. These problems represent only a small taste of the dozens of potential problems which more extensive DNA data banking might raise.

    In order to study the problems which a more detailed knowledge of the human genome might bring about, the National Institutes of Health, which leads the international research effort, created the Ethical, Legal, and Social Implications (ELSI) working group to study the problems implicit in genetic identification and DNA data banking.

    Mark Rothstein, a professor of law at the University of Houston and M. Anne Spence, a professor of pediatric genetics at the University of California Medical Center, co-chaired the working group. The group consisted of 11 scholars and practitioners. In addition to seven people drawn from medical professions, the committee included two lawyers, a medical ethicist, and Stephen Hilgartner, a professor of science and technology studies at Cornell.

    “Not so long ago,” says a 1996 report from the ELSI working group, “accessing a database of mapped genes seemed as futuristic as boarding the Starship Enterprise. With the tremendous progress in mapping, [scientists] have amassed an impressive list of gene discoveries and a host of ethical questions arising from developments in gene technologies.”

    Disability activists claim that even using DNA screening to prevent the development of detectable inherited disease may pose a form of discrimination, according to Hilgartner. This use of the technology, activists believe, may select disease genes out of the population and narrow the public definition of what represents normal health. This could potentially hurt the social standing and political power of people with disabilities. “This [technology involved with genetic screening] excludes plenty of people walking around and may represent a real threat,” Hilgartner said.

    Legislators have begun to address potential commercial exploitation of computerized medical records which encompass genetic information. Already, Congress has asked the Federal Trade Commission to respond to possible violations of consumer privacy rights by companies that operate consumer data bases which include, among other privileged information, medical records.

    Many experts and policy makers call for regulatory controls to ensure that advances in the technology will not heighten risks. Currently, an uneven fabric of state law controls access to medical data: 34 states ensure confidentiality and 28 permit patients to access their genetic records. A number of comprehensive proposals Congress is currently considering aim to guarantee the confidentiality of medical records.

    Two major federal laws are already on the books. The DNA Identification Act is a 1994 federal law intended to protect computerized genetic profiles from improper dissemination and use. The law established an FBI DNA Advisory Board to make DNA-related recommendations to law enforcers and data banks, and required states to adopt confidentiality rules and use DNA profiles only for law enforcement purposes. The law has led states to draw up new rules and tighten restrictions, but it has hardly stopped the steady flow of information about DNA between organizations.

    The Kassebaum-Kennedy Bill, a health care reform bill which Congress passed last year, also deals with problems of discrimination which might arise from DNA data banking. The law’s major provision bans insurers from discriminating on the basis of genes or other preexisting conditions. Thus, at least from the standpoint of health insurance, genetic discrimination should not be a public worry. Nonetheless, the laws have drawn criticism from many individuals.

    Privacy advocate Barry Scheck is one critic. In testimony he told the ELSI working group that the legal limits offer vague and insufficient protection against the risks of improper use of banked DNA. According to Scheck, law enforcement officials have wide discretion on how to use genetic information. Soon, he said, state law enforcement data banks may have the technology to communicate with each other and allow crime investigators to compare profiles across state lines.

    Another critic of DNA data banking, Victor Weedn, a Department of Defense official, told the ELSI working group that the greatest risk arises from unprotected tissue samples used in health research. Whereas Congress and the Advisory Board subject the FBI to a high level of public review of its use of DNA, a proliferation of private research labs encounter little government oversight and regulation of their use of clinical DNA.

    But DNA profile privacy issues don’t concern everyone. “I don’t see why genes should be privileged information,” said William Provine, a professor of biology at Cornell. “Insurers already judge us by our medical records. DNA is just another part of those records.”

    The Medical Records Confidentiality Act, proposed during the last session of Congress, aims to answer one complaint of privacy advocates by prohibiting collection, sharing, and sale of private medical information and disclosure without the consent of the person concerned. Further, the law would allow patients to prevent commercial trade of private medical records between HMOs, insurance companies, and lenders. While the bill never came up for a vote during the last session of Congress, many expect it to be voted on at some point in 1997.

    With or without the bill, DNA data banking will remain a thorny issue. There is no reason to believe that any legislative program could answer all of the concerns of the most hard line privacy advocates. Scientific progress and the individual’s need for privacy may not always be in balance. Likewise, it seems a virtual certainty that genetic research will continue to bring forward problems which society will then have to confront.