How Genetic Discrimination Works

A researcher is reflected in a monitor showing the pre-implantation genetic diagnosis procedure he's performing.
A researcher is reflected in a monitor showing the pre-implantation genetic diagnosis procedure he's performing.
Fairfax Media/Fairfax Media via Getty Images

When Ethan Hawke and Uma Thurman appeared in the movie "Gattaca" back in 1997, the technology that drove the plot didn't yet exist. The story was supposed to take place sometime in the 2020s. In that near future, medical science had advanced to such a degree that parents could ask experts to genetically tinker with their embryos in order to create near-perfect human specimens.

The idea was not that anybody had grand plans to create a master race, but simply that parents wanted to give their children the best possible start in life, and those who could afford to, did. Affordability was key. In "Gattaca" the result was that society had become stratified into two classes, "valids" born to parents who could afford to make sure they had perfect genes, and "in-valids" who were born the old-fashioned way and were deemed genetically inferior.

Compelling sci-fi fantasy, but fantasy nevertheless. Right? Well, as it turns out, "Gattaca" wasn't that fantastical after all. Around the time the film came out, scientists were already working with a new fertility-related technique called preimplantation genetic diagnosis (PGD). This technology evolved with the growth of in vitro fertilization (IVF). PGD allows clinicians to analyze the DNA of an embryo that's just days old. The analysis can find those rare conditions that are caused by a single gene mutation, like Huntington's, Tay-Sachs or cystic fibrosis. In fact, the technique was supposed to be used only when such unusual, but debilitating, diseases were considered likely to appear [source: Jabr].

Of course, one problem with this technology is that it can be imprecise. Think of the earlier case of Colman Chadam who had the genetic markers for cystic fibrosis but never developed it. And, as is the way with technology, unintended consequences always appear. In one remarkable case, rather than screening to prevent a perceived disability, a deaf, lesbian couple wanted to ensure their child would in fact be born deaf. Every sperm bank they queried refused to screen for the condition, claiming they didn't accept sperm from deaf men. In the end, a family friend provided the necessary genetic material, and the couple's son was born partially deaf. While some bioethicists and doctors were outraged, the couple argued that deafness is a culture, not a disability and that they had every right to want their child to be a part of their community [source: Jabr].

Since the development of PGD, people have also used it to make sure their kids won't be the "wrong" sex. In fact, sex selection is one of the more common uses of the technique. It's illegal in Canada and the U.K., but not in the U.S. That's because there are rare cases where you can avoid a genetic disorder by selecting for a specific sex. Doing it for other reasons (e.g., you just really want a daughter) is frowned upon but not policed [source: Jabr].

And speaking of unintended consequences, forensic geneticists have been able to link certain physical characteristics like eye and hair color to genetic makeup. Already, the head of an international group of fertility clinics has proposed offering parents the ability to customize their children's appearances [source: Jabr]. Although he was roundly condemned for this by other clinicians (not to mention the Vatican), it's not hard to believe that when such technology becomes available, there are parents who will quietly opt for it. Right now, there's no law that says they won't be able to. And the fear is that in the absence of laws, the market will rule. And if the market rules, and genetic technology continues to develop, the consequences could be rather Gattaca-ish, with a society divided between those born into families who can afford to genetically modify their children and those who can't. That'll be an all-new kind of genetic discrimination.

Author's Note: How Genetic Discrimination Works

It seems to me that a high-tech version of eugenics is already here. When women in the developed world become pregnant, health care providers typically offer them the option of testing the embryo for the possible presence of Down syndrome. Parents can do what they will with the resulting information, including terminating the pregnancy. DS is not a life-threatening condition. It's not even a disease. As genetic technology advances, there will be more and more of these kinds of tests with more and more profound decisions to be made. Having a kid will just become more and more nerve-wracking.

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More Great Links


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