San Diego In 20 years, are you likely to meet yourself? Could someone clone another you from a Kleenex you dropped? Will your insurance premium depend on your DNA test results? Will a federal DNA data bank ban procreation among less than DNA-perfect couples?
These are problems of the future, but as Tom Gilroy of San Diego's Genetic Profiles Corporation lab in Sorrento Valley confirms, even right now, DNA can cause ethical heartburns.
Paternity is Gilroy's business. Men and women troop up his stairs to an office in a Sorrento Mesa business park to have their blood taken for his $450 paternity test. Most of them live too far away to show up themselves, so they send their blood samples from elsewhere around the country, two vials each, by Airborne Express, to answer personal questions about whether they are the real fathers, mothers, sons, or daughters of someone they love or hate, someone alive or dead.
This afternoon, Gilroy, a Ph.D. in human genetics who founded Genetic Profiles in 1990, is having problems. His secretary balances a telephone in each hand, passing messages from one party to another. It's obvious the two parties are not talking to each other.
"The guy's a little paranoid," Gilroy says, pointing to the left phone. "He's worried that someone would switch blood on him. The woman might just be trying to make it tough for him. She insisted that he drive 80 miles to where she is to have the blood sample taken, because I think she wanted to be sure it was him. But he's afraid that she might figure out some way to find the real father's DNA and plug it in [and say the baby is his]. He's just being paranoid. We use these [methods] where that's not possible. What we do is do the testing and let the chips fall where they may. We try not to get too involved with the [drama]. We don't care who wants what, because the molecules tell us what's happening. But it's hard to tell that to someone who's paranoid."
We're standing in his second-floor lab and office. His assistant Matt works quietly between incubators and shaking baths and microwaves, creating gels to lay DNA samples in. Each sample will be tested five times, each DNA probe will be incubated at 55 degrees Celsius until it attaches to its target, the customer's DNA. After two or three weeks, the samples' molecular weight will be measured, and they will show Gilroy a pattern that will tell him an irrefutable story about two human lives. It's eerie to think that right here, maybe 50 relationships are hanging in the balance.
How hot can DNA issues become? Some believe a recent case in Ventura County could set a pattern for the future.
When 66-year-old William Hike died of emphysema at St. John's Pleasant Valley Hospital April 29 last year, one of Hike's five living children, Amber Hunt, asked the hospital to make some of her dead father's blood available for a paternity test. She suspected she was not Hike's biological child. The hospital agreed and sent vials of Hike's blood to Long Beach Genetics for DNA testing. According to the Ventura County Star, the results came back in one typed sentence.
"William Hike is not the father of Amber Hunt."
That sentence ignited a firestorm. Dorothy Hike, William's widow, sued the hospital and its sister facility, St. John's Regional Medical Center in Oxnard, for $75,000 for releasing her dead husband's blood without her permission. She also sued the lab, Long Beach Genetics. (The cases were tossed out of court, but Mrs. Hike is appealing.)
Whether or not she succeeds, the case has raised myriad questions. Who has a right to another's DNA details? Aren't the remains of the dead sacrosanct? Does the need-to-know of the living supersede the dead's right to privacy?
Gilroy does get requests to do paternity tests on people who have died.
"It seems that usually the body will be at a coroner's office, perhaps, and sometimes it's a young man who has died in a car accident. We've had people who would call in and seem to get clearance from the coroner when the woman, usually the mother of a child, says she thinks it is the offspring of the deceased man. Either the wife or the mate of the deceased man would be able to get the samples released, or more commonly, she'd go through his parents to get it released. Typically when the police find that someone of that age who might be involved in a paternity test dies, they save some blood for insurance purposes, I guess, [and] for the possible involvement of drugs or alcohol."
And in a case like William Hike's? "I think we would look to the hospital and ask, 'Are you adequately cleared to release it?' If they released it, I think we would be doing the testing, because you're dealing with a living person who says, 'I really need to know, I need to know if this is my father.' "
More common are requests from men who suspect their wives have been sleeping around and want to know for sure that they're the father of a child. "The alleged father is often the one who calls in and wants it done," Gilroy says. "He just wants to be comfortable. He's saying, 'I could be the father of this child... Then again, I may not be. If I'm not, is it really right for me to be supporting this child at the same level that I would if I weren't the father?'
"Quite frequently the mother is also calling in and wants it done, and she may even be paying for it. She wants to demonstrate [to her partner] that he is the father. On rare occasions, she wants to demonstrate that he's not the father."
But there appears to be one class of male whose rights stop at the DA's office door. "We get a lot of the ones who [are ordered to be tested for paternity] by the court, or through the district attorney's office.... One of these guys may walk in and give blood under his own power, but he's not what you'd call a happy camper. He's doing it because he totally has to. That's pretty common, too."
Gilroy's most emotional moments come from grown kids coming up his stairs looking for parents. This is often their place of last resort.
"We had one young lady who -- and I kind of felt sorry for her -- she went through I guess four or five men who were tested. She was really trying to find her father. Her mother was even cooperating in the testing. We tested and retested all of them, or all but one of them, and one of them was what we called a grandparentage study. The man they really wanted to know about was dead, so they were testing the alleged paternal grandparents. Two labs found the same thing exactly; none of these four or five men were her father. She left us still looking for her father."
DNA-based paternity testing has been a mushrooming industry since "about 1987, as far as actually being applied to resolve cases," Gilroy says. Now Gilroy has bigger plans for his lab. With the Human Genome Research Project aiming to identify 80,000 human genes, and as a result able to pinpoint warning flags of many diseases, he sees DNA testing as having a far more spectacular future.
"We'll probably get into other kinds of genetic tests," he says. "Genes that predispose to heart disease, different types of cancer, alcoholism, and various other things."
Such tests can only do good, he believes, just as his current paternity service does. "It's real clear when you can give these results to people that some of them feel like they've been tremendously helped by learning the results; it clears their mind."
But medical bioethicist Art Caplan says this power to predict lives has real dangers.
"People think they have a lot more privacy than they've got. They don't understand the threats to their privacy posed by things like DNA information," says Caplan, who runs a bioethics center at the University of Pennsylvania. "You don't want to get in a situation where people's DNA is FedEx'd around the country willy-nilly to anyone who wants to take a look. You also don't want to get into situations where people run by and scrape something off the chair you just sat in. You can get DNA from all kinds of things. Kleenex tissues, something left in the bathroom, sweat at the health club.
"Remember, we're in our infancy. We don't have very good genetic tests still for most things. But soon enough we're going to have [DNA] tests that will say who's schizophrenic, who's dyslexic, who's likely to have a neurotic personality... A lot of behavior and personality as well as diseases have a strong genetic influence. I am not a believer that genes are everything, but they're powerful."
Caplan says there are no federal privacy statutes specifically governing this genetic information. "There is no information about consent to release DNA to others. There literally is no law prohibiting someone from taking DNA from a public place like a rest room or a hospital trash bin and using it or analyzing it. It's waste material. So it's this very interesting set of coded information that reveals much about us.
"If you think about it, not only do you want to protect [DNA's] privacy for people testing and finding out things about you, but you certainly don't want to see the day come when cloning is possible and they can reproduce you without your permission. From a Kleenex."
But aren't we talking science fantasy, at least in the present?
No, says Caplan. "We've seen DNA testing appear in criminal areas in forensics. So we know that people have gone to jail from DNA sampling of leftover tissue material. And they've been released from prison on the same grounds. So it's not fantasy. It's happened in the criminal justice system already."
Caplan understands the call to take DNA from a dead person if it helps the living. "It's understandable that people want to find out biological facts about ancestors or parents or siblings. But if I wanted to know if you were my brother, I don't have any right to force you to give me a sample of your blood. I can't invade your body to answer my question. And I think that your right to control your genetic information should extend even to things that are left behind, that fluff off of you, sort of dripping off in different ways, whether they are excreted, flaked off, I don't much care. It seems to me they are still yours, and people should have to get your permission before they can use them. And even if they find them, so to speak, in the street or on the proverbial toilet seat, there should be laws that say, 'You can't release this information unless you've obtained the permission of someone.'
"We have nothing like that [on the law books] here. There's nothing like that in Europe either. Those protections do not exist."
The most insidious influences, Caplan predicts, won't be government coercion but commercial persuasion. "I would see a time when you'd be [held] 'irresponsible' not to test your mate, let's say, before you had a baby. It becomes the responsible thing to do -- to [test for propensity to] diseases, make sure your mate will make a perfect baby. I think that's the direction that genetic testing is going to go. Normally we think of it as something that is forced upon us by government or the military or big business. But in American culture, instead of being forced upon us by an insurance company, it's much more likely they're going to be sold to us, by commercial companies interested in providing testing. 'Check her out, before you do it.' "
The vision of the line being drawn between the "qualified" and the "nonqualified" is at once enticing and frightening. Will TV ads and science succeed in creating Hitler's dream of the "perfect race" where Hitler failed by brute coercion?
"I don't really see that it's a huge problem at this point," says Gilroy. "I do think that we will see more thought put into this as more genes become available and more people become interested in their genetic makeup. I guess there are still some things to be settled, [but] issues of insurance companies and employers are pretty old ones now. I was studying this stuff back in the mid-'70s, and these things were already being talked about."
Caplan is less optimistic. With the specter of national DNA data banks and ready access to them via the Internet and no limiting laws in place, he's already waving good-bye to an individual's right to privacy. "It's going to take a concerted effort to [legislate] anything back. I'm not sure that we will. I think that privacy is a horse that jumped over the fence, and its rear end is receding in the distance."