Today’s announcement of the mapping of the human genome by a private corporation and a public consortium should be met with suspicion as well as hope.
The corporate bid to own and control information about the human genetic code is an omen of the next great struggle facing humanity. It makes real the question of whether corporations will be able to know and control human destinies based on their intimate knowledge of a person’s DNA, a possible road map of their future.
The mapping of the genome opens a Pandora’s box for the balance of power between corporations and humans, as well as for the meritocracy Americans have strived to create. If corporations can read a person’s DNA, they can control their fate. The threat demands one of the strongest privacy privileges ever enacted — an absolute seal on every DNA test that is administered and establishing criminal penalties for corporate trafficking in such information.
Today, banks typically utilize “credit scoring” to determine whether an applicant is approved for a loan and at what interest rate. The score is a composite of reasonable factors, such as the person’s timeliness in paying bills, and more arbitrary factors, such as how many times a credit report on the applicant has been requested. What if banks, insurance companies and other corporations could view genetic profiles of applicants, a genetic score based on a simple DNA test? These corporations could know the person’s likelihood of developing chronic or fatal diseases, how old they will probably be when they die, and the potential their children have of developing diseases. Such power in the hands of today’s Goliath corporations, which freely share personal information about human beings, could restrict a person’s employment, educational, insurance and other financial opportunities.
Absent a genetic privacy seal, banks could make a compelling case to view an applicant’s DNA before making a loan. If you are likely to die soon, the bank should know to have a co-signer. Already, life and health insurance companies require that medical records be shared, and blood work be performed, before a policy is issued. If DNA testing can accurately depict any medical state in the future, why should Americans not be required to submit the results of those tests as a condition of coverage?
American society’s answer will say everything about the state of human vs. corporate rights. For the purposes of law, corporations have already won the same rights as people to the Bill of Rights — freedoms of speech, due process and association. Despite such legal fictions, the founding fathers had in mind only the human being’s guarantee to life, liberty and the pursuit of happiness.
However, California corporations have already invoked their constitutional protections in opposing recent state legislation that requires people to affirmatively allow the sharing of their private financial information before corporations do so.
Genetic privacy is the ultimate stakes in the fight between corporations and people for protection under the Bill of Rights. An American’s fundamental right to liberty should include never being forced to submit to a DNA test as condition of commerce. The people’s rights to control their lives should trump any corporation’s right to knowledge about them that could predetermine their future.
Genetic disposition is certainly not within a human being’s control and diet, environment and other behavior more determinative. Matt Ridley, author of Genome, writes, “Unless you are unlucky enough to have a rare and serious genetic condition, and most of us do not, the impact of genes upon our lives is a gradual, partial, blended sort of thing.”
Unfortunately, insurance companies, banks and other corporations do not operate on the basis of such subtleties. They try to hedge their financial risks, often based on the most unreasonable stereotypes, in the same way that insurers have based auto insurance premiums on where people live, grouping them by their ZIP code, rather than how they drive.
Even if a person has a 99 percent chance of contracting a deadly disease, the power to know or not know, share or not share, must always reside with the individual, not the corporation.
Penalties for genetic crimes should be the corporate equivalent of dealing crack at an elementary school. There is no reason for a corporation to have information about your DNA, except to discriminate. The ultimate test for our society’s commitment to privacy, and its dedication to human rights over a corporation’s, is whether people can be guaranteed a private audience with intimate knowledge about their potential fate.
Consumer advocate Jamie Court is co-author of “Making a Killing: HMOs and the Threat to Your Health” (Common Courage Press, 1999). To respond, email [email protected].