ASU Research E-Magazine: Gene Mythology

Social security numbers, credit card records, tax information—all reveal a great deal of personal financial information and, yet, are fairly accessible to the public. Although a bit scary, the accessibility of personal information is a reality most Americans have learned to live with.

Why should personal genetic information be any different? Probably because the thought of someone else knowing what is in your bank account is not as fundamentally disturbing as someone else knowing your what is in your genes.

The fear factor is part of gene mythology, the notion that who you are is determined by what is in your genes. This idea of genetic essentialism is not entirely rational or grounded in scientific fact, but it is real to many people.

“That’s a big problem in this field,” says David Kaye, acting director of ASU’s Center for the Study of Law, Science, and Technology. “People have exaggerated fears about genetic privacy, but it’s not enough just to tell people they’re wrong. That’s not going to accomplish a lot. There has to be a way of educating people about the realities of genetic information, of breaking down that genetic mystique.”

Shattering this genetic mystique is one way to ease concerns regarding more liberal use of DNA profiling for law enforcement, Kaye adds.

Although it is commonly said that someone has the “gene” for a certain characteristic, say red hair, this is not entirely accurate. All humans share the same set of 70,000 to 100,000 genes in two copies laid out along 23 pairs of chromosomes. No human being alive has any extra genes. There is no red hair gene. There are only alternative forms of genes, called alleles, that we all share.

It is different forms of the same genes, rather than different genes, that distinguish individuals from one another.

Furthermore, what makes one unique at the genetic level is the combination of alleles that he or she carries, not any one allele. If you are not an identical twin, the chance that someone else in the world has the same combination of alleles at all 70,000 to 100,000 genes is essentially zero, even though none of your genes or alleles is unique.

If our genes are not, in fact, unique, then why all the concern about genetic privacy?

Although we share identical genes and alleles with thousands, even millions, of other human beings, some of our alleles can still reveal very personal information. For example, certain gene variations have been linked to breast cancer.

Theoretically, other genes eventually may be discovered that identify a predisposition to alcoholism, manic depression, or other potentially stigmatizing conditions. Although thousands of individuals may carry these genes, those people who are known to have the genes may be at risk of discrimination based on that information.

Assuring the public that this information won’t be misused may be more difficult than overcoming ideas of genetic essentialism.

“Many people say genetic information is different from fingerprints,” explains James Strick, an assistant professor with ASU’s biology and society program. “Not because they foolishly subscribe to the idea of genetic essentialism, but because genetic information has the potential to be misused for discriminatory purposes—in insurance, employment, or law enforcement—in a way that fingerprints don’t. Fingerprints don’t have a social stigma attached to them.”—Jessica McCann