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Privacy Threats from Genetic Research

by Steve Dever

CPSR News Volume 13, Number 3: Fall 1995

While these scientific advances hold great promise for the treatment of diseases, the ability to analyze the DNA of individuals also has the potential to further erode our privacy. This technology could predict your chances of serious health problems many years in the future, your tendencies toward undesirable behavior, and the probability of passing such genetic traits on to your children. Such predictive powers would raise issues far beyond traditional concerns about medical privacy.

Eugenics
The study of hereditary components of human diseases and behavior goes back to the eugenics movement in the nineteenth century, long before the discovery of DNA. The term eugenics was coined by Francis Galton (a cousin of Charles Darwin) from the Greek words for "good birth." Eugenicists believed that heredity controlled not only physical traits, but also mental and personality characteristics such as intelligence, laziness, promiscuity, alcoholism, and criminal behavior. Their goal was to improve society by selectively breeding people to produce desirable traits and eliminate undesirable ones.

Eugenics was popular in the United States in the early part of this century. The American Eugenics Society sponsored contests to identify "better babies" and "fitter families" at state and county fairs around the country. These contests awarded prizes based on "objective scientific" checklists of physical and behavioral traits.

Although eugenics started from the scientific observation of inherited physical traits, its extrapolation to behavioral traits had little scientific basis. While acknowledging that environment played a role, eugenicists simply accepted as an axiom that inheritance was the dominant factor. For example, as John Horgan points out, Charles B. Davenport, an American advocate of eugenics, came to some extreme conclusions:

After demonstrating the heritability of eye, .skin and hair color, Davenport went on to "prove" the heritability of traits such as "pauperism, " criminality and "feeblemindedness. " In one monograph published in 1919, he asserted that the ability to be a naval officer is an inherited trait.²

Eugenics fell into disfavor following the Second World War, after the extermination programs in Nazi Germany became known. The Nazis had justified these programs with eugenic arguments. In reaction, science and society came to view "nurture"' rather than "nature" as the dominant cause of behavior.

Genetic Research
DNA was identified as the basis of heredity in the 1930s, setting the stage for the science of molecular genetics. During the 1950s, progress began to accelerate, based on Watson and Crick's discovery of the molecular structure of DNA and the basic mechanisms by which it controls the development and activity of all living things. By 1989, advances in techniques of DNA analysis, as well as in computational power, allowed the undertaking of the Human Genome Project. This 1 5-year project, funded by the United States government, has the ambitious goal of mapping all the genes in the human body.

In the past few decades, scientists have identified either the responsible gene or a marker (a nearby gene transmitted along with the responsible gene) for illnesses such as cystic fibrosis, Huntington's disease, Duchene's muscular dystrophy, and one form of Alzheimer's disease. These are all single-gene disorders; that is, they are caused by one form of a particular gene. However, most genetically determined properties result from the interactions of multiple genes. Identifying the genes responsible for multiple-gene disorders is a much more complex process.

Medical Privacy
All the privacy issues involving traditional medical information concern genetic medical information as well. The questions of who should have access to the information and how the information should (or should not) be used to influence employment, credit, and insurance decisions apply equally well to genetic and non-genetic information. However the development of genetics also raises some new Issues.

One unique feature of genetic information is that the individual subject has little control over its dissemination. As an adult, you can take measures to control to some extent who has access to your medical information. However, genetic tests during childhood (or even before birth) can predict your future health problems decades in advance, long before there is any possibility of your exercising any control. Moreover, even tiny samples of skin, hair folicles, or body fluids are in principle adequate sources from which to derive your complete genetic profile. Further, since inferences about your genetics can be made from the results of genetic tests of your parents or siblings, protecting your own data is often not enough.

Another area greatly affected by genetics is reproductive freedom. Genetic testing allows a couple who may be carriers of a genetic disease to determine their risk of having a child with the disease. This information can help them make a personal decision of whether to attempt to conceive a child or continue a pregnancy. However, once their insurance company learns of their genetic condition, it can exercise economic coercion over their choice by threatening to deny insurance coverage or cancel their policy.

Behavioral Genetics
One area of genetics with tremendous potential for abuse is behavioral genetics. Researchers in this field are working to predict behavioral traits from genetic profiles. In addition to identifying people predisposed to mental disorders such as schizophrenia and manic-depression, such geneticists hope to be able to determine predispositon to alcoholism and even to criminal behavior.

Linking complex human behavior to genes is difficult because diagnoses of behavioral conditions can be subjective. In addition, even the most ardent proponents of behavioral genetics admit that environment plays a major role. For example, an article which claimed a genetic basis for criminal behavior noted that "Regardless of genetic background, improved social conditions seem to reduce criminality."³

So far, attempts to identify particular genes responsible for behavior have been largely unsuccessful. Several so-called discoveries have not held up under further scrutiny. For example, in the 1960s, researchers claimed that men who had an extra Y chromosome were predisposed to violence. However, ' follow-up studies indicated that while extra-Y men tend to be taller than other men and score slightly lower on intelligence tests, they are otherwise normal."⁴ Moreover, claims for genetic markers for manic depression and schizophrenia, made in other studies, have since been retracted.⁵

Even though researchers arc still far from identifying a specific genetic basis for behavioral traits, it is likely that genes do have some influence on behavior, and that genetic links to behavior will eventually be identified. This possibility raises many questions regarding what to do with the information. Since environment plays a significant role in behavior, there is no way to determine in advance which of those people identified with a genetic predisposition to a behavioral trait will actually develop the trait. Therefore, proponents of behavioral genetics advocate early intervention programs in schools to help people whose genes indicate a propensity to behavioral problems. Whether or not this is a good idea is certainly debatable. However, in the current political climate, funding for such educational intervention programs would be difficult to find. In fact, there have been efforts to use genetics as an excuse to drop such programs. For instance on Long Island (in New York State), members of an organization seeking to reduce school taxes have campaigned against the school system's program of special education classes for learning-disabled children. Their argument is that learning disabilities are of genetic origin; therefore the responsibility falls to the medical system, not the schools.⁶

If we develop technology for predicting behavioral tendencies from a person's genetic profile, keeping the results confidential will be difficult, and this will raise further problems. If, for example, some people cannot obtain an education or a job because their DNA predicts a tendency to criminal behavior, the prediction may turn out to be a self-fulfilling prophesy.

Conclusion
While the "genetic revolution" promises significant advances in our ability to diagnose and treat diseases, we must take care to protect people's privacy. The history of eugenics offers some lessons regarding the dangers we face. However, there are also encouraging signs. The National Center for Human Genome Research has established a program that specifically addresses the ethical, legal, and social implications of human genome research.⁷ And, on March 7 of this year, the U.S. Equal Employment Opportunity Commission took a small step toward protecting genetic privacy by requiring that employers not discriminate against people who are genetically predisposed to a disease, but who are otherwise healthy.⁸ Events such as these raise the hope that there is a growing recognition that serious risks will accompany the unquestionable benefits of progress in genetic medicine. The challenge will be to exploit these benefits while shielding the individual from the harsh effects that will surely follow if the privacy of genetic information is not protected.

Notes
¹ Billings, Paul, "The Genetic Revolution and the Bill of Rights," address to American Bar Association National Convention, February 1991.
² Horgan, John, "Eugenics Revisited," Scientific American, June 1993, p. 130.
³ Mednick, Sarnoff, "Crime in the Family Tree," Psychology Today, March 1995, p. 60.
⁴ Horgan, p. 124.
⁵ Horgan, p. 127.
⁶ Nelkin, Dorothy, and Lindee, M. Susan, The DNA Mystique: The Gene As a Cultural Icon, W.H. Freeman and Co., 1995, p. 163.
⁷ U.S. Department of Health and Human Services, Public Health Service, National Institute of Health, "Program on the Ethical, Legal, and Social Implications of Human Genome Research: A Guide for Applicants," June 1993.
⁸ "Workplace Gene Discrimination Barred," Facts On File, 13 April 1995.

Steve Dever is CPSR's national secretary and has worked as a computer, professional for 14 years. He can be reached at sdever@cpsr.org.

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