Originally broadcast September 4, 2009

SAUL GONZALEZ, correspondent: Unlocking and interpreting the secrets hidden in DNA used to be the province of scientists and medical researchers. But now it’s a growing business, one that’s selling genetic information directly to American consumers, making a DNA test as easy to buy as housewares or clothing.

JACK LORD (CEO, Navigenics): You know, I think for the history of man people have always wanted to see something about their future, and now, through the power of genetics and genomics, we are able to look into the future in a science-based way.

GONZALEZ: Jack Lord is the CEO of Navigenics. It’s a California-based company that for a fee of $999 offers its clients a personalized DNA test, one that pinpoints genetic markers indicating possible future threats to their health.

Jack Lord

JACK LORD: It’s really simple. It’s some saliva that we collect. We analyze that and then give you a report that shows what your risks are compared to people in the population at large. So today we test for 28 conditions, and they range from chronic conditions like diabetes or heart disease, to cancers like melanoma or prostate cancer or breast cancer, to other conditions that are generally silent diseases like glaucoma and macular degeneration, celiac disease, to Alzheimer’s disease.

GONZALEZ: Navigenics is one of a growing number of new companies selling genetic tests directly to the public. All of them promise their clients better health and a better life by getting up close and personal with their DNA.

MIKE GODFREY (Navigenics Client): Once you log into the Navigenics site, you get a snapshot page here that just really outlines in these square boxes what you are at a high risk for, what you are at average risk for, and what you are at lower than average risk for.

GONZALEZ: Mike Godfrey, who works in corporate communications for a hospital in San Diego, is a Navigenics client. When he first got his DNA results back, Godfrey was surprised by his relative risk for several illnesses when compared to the rest of the population.

GONZALEZ (speaking to Mike Godfrey): …diabetes, Alzheimer’s disease, heart attack, brain aneurysm, obesity….

MIKE GODFREY: …atrial fibrillation, obesity…

GONZALEZ: That would seem to be a lot to be worried about.

MIKE GODFREY: …Graves disease, which I never even heard of before. So to be honest, in my initial reflection when I looked at this, I went whoa!

Mike Godfrey

Personal trainer to Mike Godfrey: One more. That’s all you need. Just one more.

GONZALEZ: Although he says he’s not overly concerned, Godfrey’s DNA test results have spurred him to think more about his health and spend a lot more time at the gym.

GODFREY: When you look through all of those orange boxes that we went through and you take a look, almost all of them say that you should keep your weight down, that you should stay in shape, that you should eat better. It was validation to me that, yeah, that was the right move and your money is being spent in the right place and the work you are going through is going to be worth it in the end.

GONZALEZ: Lord says his company offers tests only for treatable or preventable illnesses, giving clients an edge in anticipating and avoiding future health problems.

JACK LORD: And it is with that information that they can start to understand what they might do today to prevent an illness. If you know that in advance you can start going to your doctor more frequently to be checked, or you might start a medication that prevents that condition much earlier than when you become symptomatic.

SARAH CROSBY-HELMS (Navigenics Client): It doesn’t say you are going to die, here’s why. It says here are some things you are prone to, and here’s how you can prevent them from showing up in your body later.

GONZALEZ: Sarah Crosby-Helms, another Navigenics client, discovered through her test that she had a higher than usual genetic risk for both colon cancer and Crohn’s disease. The information got Crosby thinking about how much she really wanted to know about future threats to her health.

SARAH CROSBY-HELMS: For me, I would rather know that I have this genetic predisposition than to not know, and if that means that…

GONZALEZ: Ignorance isn’t bliss?

SARAH CROSBY-HELMS: No, ignorance for me is not bliss.

Sarah Crosby-Helms

GONZALEZ: The direct-to-consumer genetics testing industry says it promises its clients a glimpse over their health care horizon, warning them of possible dangers and threats to come. But critics aren’t so sure. They worry that the technology is being oversold and that it raises a host of both ethical and public policy concerns.

ALEXANDER CAPRON (Professor of Law and Medicine, USC): We don’t know everything about the relationship between genes and diseases, and even what we do know doesn’t really tell you that much about what should you do now.

GONZALEZ: Alexander Capron is a professor of law and medicine at the University of Southern California and the former director of the ethics program at the World Health Organization. He’s concerned that as genetic tests become more common, a growing number of people will overemphasize DNA as the road to a long life and personal happiness.

ALEXANDER CAPRON: There are so many other things that are equally or more important and that are actually things that we should be more concerned about in our environment, in our human relations, in social justice, so that all people have an opportunity to have a life in which they can flourish and so forth, and not just narrowly, well, what’s your genetic code? I would also be aware that you could have some surprises that you really don’t want to know, that you would just as soon not have on your mind. What should you do now? What difference should this make in the way you behave, in the health care you get, in your relationships with loved ones, your plans for your future? Should you not take a certain job because the payoff in that job won’t come for ten or twenty years, and you have got a gene that says you have a twenty percent chance of getting breast cancer or something? What should you do with that information?

GONZALEZ: There are also concerns among some health experts about the regulation of direct-to-consumer DNA testing. Currently, no federal agency such as the Food and Drug Administration or Federal Trade Commission has come up with rules to monitor the companies’ marketing claims, testing practices, or the validity of results.

Alexander Capron

ALEXANDER CAPRON: I think we are still in early days on the regulation side, and the FDA has more work to do here. The field has grown, I think, faster than anyone expected.

GONZALEZ: Worried about the licensing, utility, and accuracy of direct-to-consumer genetic tests, some states, such as California and New York, have sent cease-and-desist letters to prominent DNA testing companies. Then there are the privacy worries and whether someone’s genetic information could leak out to insurance companies or employers. Lord acknowledges protecting genetic data is crucial to his company’s reputation and future.

JACK LORD: Privacy is to Navigenics like safety is to Volvo. We have to have — our brand is dependent on privacy and the integrity of privacy and security, and the visual that we use is imagine walking into a bank vault and inside that bank vault there are safe deposit boxes, and the only way you open that safe deposit box is if you have a key, and the bank has the key, and that’s the way we have built our systems. You have control over how that information is accessed, what it’s accessed for, and who actually has access.

GONZALEZ (speaking to Mike Godfrey): You’ve just shared a great deal of your genetic information with us. Do you have any privacy concerns, sharing it with us and by extension an audience across the country?

MIKE GODFREY: Obviously, I don’t.

GONZALEZ: Mike Godfrey’s confidence comes partially from the genetic nondiscrimination privacy act passed by Congress in 2008. It prohibits health insurers from denying coverage based solely on a person’s genetic predisposition.

MIKE GODFREY: My feeling is that those laws will be continued to be updated and that there won’t be much risk to me in the future or to anybody who does this. I think that this will become a pretty standard approach as you go into the future, for adults and maybe even for children when they are very young.

GONZALEZ: As he uses his genetic results to guide his heath decisions, Godfrey is also a test subject. He’s one of thousands of Navigenics clients who have volunteered to be monitored for the next twenty years as part of a scientific study. It’s purpose? To find out how—and if—people change their lifestyles after finding out what’s in their DNA.

Personal trainer to Mike Godfrey: Bring it all the way up.

For Religion & Ethics NewsWeekly, I’m Saul Gonzalez in Los Angeles.

SAUL GONZALEZ, correspondent: Unlocking and interpreting the secrets hidden in DNA used to be the province of scientists and medical researchers. But now it’s a growing business, one that’s selling genetic information directly to American consumers, making a DNA test as easy to buy as housewares or clothing.

JACK LORD (CEO, Navigenics): You know, I think for the history of man people have always wanted to see something about their future, and now, through the power of genetics and genomics, we are able to look into the future in a science-based way.

GONZALEZ: Jack Lord is the CEO of Navigenics. It’s a California-based company that for a fee of $999 offers its clients a personalized DNA test, one that pinpoints genetic markers indicating possible future threats to their health.

Jack Lord

JACK LORD: It’s really simple. It’s some saliva that we collect. We analyze that and then give you a report that shows what your risks are compared to people in the population at large. So today we test for 28 conditions, and they range from chronic conditions like diabetes or heart disease, to cancers like melanoma or prostate cancer or breast cancer, to other conditions that are generally silent diseases like glaucoma and macular degeneration, celiac disease, to Alzheimer’s disease.

GONZALEZ: Navigenics is one of a growing number of new companies selling genetic tests directly to the public. All of them promise their clients better health and a better life by getting up close and personal with their DNA.

MIKE GODFREY (Navigenics Client): Once you log into the Navigenics site, you get a snapshot page here that just really outlines in these square boxes what you are at a high risk for, what you are at average risk for, and what you are at lower than average risk for.

GONZALEZ: Mike Godfrey, who works in corporate communications for a hospital in San Diego, is a Navigenics client. When he first got his DNA results back, Godfrey was surprised by his relative risk for several illnesses when compared to the rest of the population.

GONZALEZ (speaking to Mike Godfrey): …diabetes, Alzheimer’s disease, heart attack, brain aneurysm, obesity….

MIKE GODFREY: …atrial fibrillation, obesity…

GONZALEZ: That would seem to be a lot to be worried about.

MIKE GODFREY: …Graves disease, which I never even heard of before. So to be honest, in my initial reflection when I looked at this, I went whoa!

Mike Godfrey

Personal trainer to Mike Godfrey: One more. That’s all you need. Just one more.

GONZALEZ: Although he says he’s not overly concerned, Godfrey’s DNA test results have spurred him to think more about his health and spend a lot more time at the gym.

GODFREY: When you look through all of those orange boxes that we went through and you take a look, almost all of them say that you should keep your weight down, that you should stay in shape, that you should eat better. It was validation to me that, yeah, that was the right move and your money is being spent in the right place and the work you are going through is going to be worth it in the end.

GONZALEZ: Lord says his company offers tests only for treatable or preventable illnesses, giving clients an edge in anticipating and avoiding future health problems.

JACK LORD: And it is with that information that they can start to understand what they might do today to prevent an illness. If you know that in advance you can start going to your doctor more frequently to be checked, or you might start a medication that prevents that condition much earlier than when you become symptomatic.

SARAH CROSBY-HELMS (Navigenics Client): It doesn’t say you are going to die, here’s why. It says here are some things you are prone to, and here’s how you can prevent them from showing up in your body later.

GONZALEZ: Sarah Crosby-Helms, another Navigenics client, discovered through her test that she had a higher than usual genetic risk for both colon cancer and Crohn’s disease. The information got Crosby thinking about how much she really wanted to know about future threats to her health.

SARAH CROSBY-HELMS: For me, I would rather know that I have this genetic predisposition than to not know, and if that means that…

GONZALEZ: Ignorance isn’t bliss?

SARAH CROSBY-HELMS: No, ignorance for me is not bliss.

Sarah Crosby-Helms

GONZALEZ: The direct-to-consumer genetics testing industry says it promises its clients a glimpse over their health care horizon, warning them of possible dangers and threats to come. But critics aren’t so sure. They worry that the technology is being oversold and that it raises a host of both ethical and public policy concerns.

ALEXANDER CAPRON (Professor of Law and Medicine, USC): We don’t know everything about the relationship between genes and diseases, and even what we do know doesn’t really tell you that much about what should you do now.

GONZALEZ: Alexander Capron is a professor of law and medicine at the University of Southern California and the former director of the ethics program at the World Health Organization. He’s concerned that as genetic tests become more common, a growing number of people will overemphasize DNA as the road to a long life and personal happiness.

ALEXANDER CAPRON: There are so many other things that are equally or more important and that are actually things that we should be more concerned about in our environment, in our human relations, in social justice, so that all people have an opportunity to have a life in which they can flourish and so forth, and not just narrowly, well, what’s your genetic code? I would also be aware that you could have some surprises that you really don’t want to know, that you would just as soon not have on your mind. What should you do now? What difference should this make in the way you behave, in the health care you get, in your relationships with loved ones, your plans for your future? Should you not take a certain job because the payoff in that job won’t come for ten or twenty years, and you have got a gene that says you have a twenty percent chance of getting breast cancer or something? What should you do with that information?

GONZALEZ: There are also concerns among some health experts about the regulation of direct-to-consumer DNA testing. Currently, no federal agency such as the Food and Drug Administration or Federal Trade Commission has come up with rules to monitor the companies’ marketing claims, testing practices, or the validity of results.

Alexander Capron

ALEXANDER CAPRON: I think we are still in early days on the regulation side, and the FDA has more work to do here. The field has grown, I think, faster than anyone expected.

GONZALEZ: Worried about the licensing, utility, and accuracy of direct-to-consumer genetic tests, some states, such as California and New York, have sent cease-and-desist letters to prominent DNA testing companies. Then there are the privacy worries and whether someone’s genetic information could leak out to insurance companies or employers. Lord acknowledges protecting genetic data is crucial to his company’s reputation and future.

JACK LORD: Privacy is to Navigenics like safety is to Volvo. We have to have — our brand is dependent on privacy and the integrity of privacy and security, and the visual that we use is imagine walking into a bank vault and inside that bank vault there are safe deposit boxes, and the only way you open that safe deposit box is if you have a key, and the bank has the key, and that’s the way we have built our systems. You have control over how that information is accessed, what it’s accessed for, and who actually has access.

GONZALEZ (speaking to Mike Godfrey): You’ve just shared a great deal of your genetic information with us. Do you have any privacy concerns, sharing it with us and by extension an audience across the country?

MIKE GODFREY: Obviously, I don’t.

GONZALEZ: Mike Godfrey’s confidence comes partially from the genetic nondiscrimination privacy act passed by Congress in 2008. It prohibits health insurers from denying coverage based solely on a person’s genetic predisposition.

MIKE GODFREY: My feeling is that those laws will be continued to be updated and that there won’t be much risk to me in the future or to anybody who does this. I think that this will become a pretty standard approach as you go into the future, for adults and maybe even for children when they are very young.

GONZALEZ: As he uses his genetic results to guide his heath decisions, Godfrey is also a test subject. He’s one of thousands of Navigenics clients who have volunteered to be monitored for the next twenty years as part of a scientific study. It’s purpose? To find out how—and if—people change their lifestyles after finding out what’s in their DNA.

Personal trainer to Mike Godfrey: Bring it all the way up.

For Religion & Ethics NewsWeekly, I’m Saul Gonzalez in Los Angeles.

BOB ABERNETHY, anchor: We have a report today on a conflict between solving crimes and protecting privacy. It’s called “familial searching.” Police can now take DNA from a crime scene and compare it to millions of DNA samples in a government database. If there is even a partial match, that could lead to the criminal by way of his or her family members if their DNA is in the database. And they could be completely innocent. Should that practice be legal? Lucky Severson reports.

Unidentified Man (working in lab): Stick it right back in there. Okay, and we’ll close it up right there. And this is the same thing, these are …

LUCKY SEVERSON: Three years ago, Pearl Wilson’s son Charles died in a Maryland prison while awaiting sentencing for rape. But for his mother, her son lives on.

PEARL WILSON: My son lives in me and I in him, and his blood is my blood, and my blood was in him.

SEVERSON: Though Charles is dead his DNA still sits in a databank. By law DNA has to be gathered from all felons. Some states even take it from arrestees. The DNA profiles remain there indefinitely.

Ms. WILSON: I’m worried about them continuously holding my son’s DNA in that database.

Pearl Wilson

SEVERSON: Attorney Stephen Mercer, who specializes in DNA issues, says Pearl Wilson has reason to be worried. He’s trying to get her son’s DNA expunged from the database because he’s concerned it might be used at some point for what is called familial searching, a new technology that has been used sparingly so far in the U.S. The most notable case was the so-called “BTK” serial killer, Dennis Rader. After 30 years and 10 murders, the BTK killer was finally caught after police obtained a DNA sample from his daughter that almost perfectly matched the DNA from her father’s crime scenes.

STEPHEN MERCER (Attorney): DNA between persons who are related is vastly more similar than DNA between persons who are unrelated. So when the government has the DNA of one family member, in effect, they have the DNA of that person’s siblings, children and parents.

SEVERSON: Here’s how it works. DNA from a crime scene is run against the nearly six million samples on file. If there’s a partial match, it likely means that a relative of someone in the database is guilty of a crime. This kind of testing could open up a whole new realm of possibilities for authorities. But critics warn that is could mark the beginning of dragnets, sweeping in people who are completely innocent and possibly violating their Fourth Amendment rights against unreasonable searches and seizures.

Sonia Suter is a bioethics professor and she’s concerned that people will see only the benefits of familial testing and not the threat to personal privacy.

Professor SONIA SUTER (George Washington University Law School): There’s a lot of kinds of uses of this — of these samples that sound great. They look good on programs like “CSI” but they might involve probing too deeply into very personal information. Could the police decide they want to do broad scale research on these samples, and start investigating the samples for links to certain kinds of illnesses, or certain kinds of propensities for behavior?

Sonia Suter

SEVERSON: Professor Suter says familial testing without safeguards may be only the beginning of a very slippery slope.

Prof. SUTER: I think people might start to feel differently about this if they imagined all of the information that could potentially be obtained. And it will only get easier to do as we identify more genes. It will only be cheaper as the technology advances.

SEVERSON: Constitutional law professor Jeffrey Rosen says the use of familial testing could signal a dramatic challenge to American civil liberties.

Professor JEFFREY ROSEN (George Washington University Law School): There’s a very profound moral lesson. My mother taught it to me actually. She said, “You should be responsible not for what you think but what you do.” And yet that idea is really being challenged by an idea of genetic surveillance that would hold people accountable not for wrong doing but for wrong being.

MITCH MORRISSEY (District Attorney, Denver): There is no privacy right that is being violated by doing familial searching.

SEVERSON: : Mitch Morrissey, the District Attorney of Denver, is a vocal advocate for familial searching. He says it’s just another tool to track down leads, the way police use partial license plates and fingerprints.

Mr. MORRISSEY: The idea that there will be some people that will be talked to that may have nothing to do with this is not unusual when you look at police work.

SEVERSON: Familial testing could help bring many more criminals to justice, says medical geneticist Frederick Bieber, who works with law enforcement on DNA issues. He co-authored a study published in Science magazine.

Frederick Bieber

Dr. FREDERICK BIEBER (Medical Geneticist): ): Based on simulations, our data suggest that it could increase the yield of investigative leads by 40 percent. So it could substantially increase the number of cases that can be resolved through added investigative leads. Why? Because of the sad reality that habits of crime are often found more commonly in family members than in unrelated individuals.

SEVERSON: Statistics indicate crime does run in families: 46 percent of inmates, in one recent survey, said they had a blood relative also in jail. One black man in nine between the ages of 20 and 34, according to a recent Pew estimate, is now behind bars. With databanks getting larger because of familial testing, critics like Stephen Mercer worry that police will be even more likely to target those areas and those minorities whose only guilt is living in the wrong place.

Mr. MERCER: For minority populations who are already disproportionately in the database, you’re approaching a scenario where nearly a majority of some populations — minority based populations — are going to find themselves under genetic surveillance by the government.

Mr. MORRISSEY: Many, many of these crimes are crimes against persons of color – people that live in the same neighborhoods, and I talk to those people, and those people want these crimes solved.

Tony Lake

TONY LAKE (Chief Constable, Lincolnshire Police, England): I do think that the plight of victims is much underplayed.

SEVERSON: Tony Lake is the chief constable of the Lincolnshire police in England. The United Kingdom has used familial matching since 2002.

Mr. LAKE: It is perfectly reasonable and absolutely right that the rights of suspects should be considered and, as it were, maintained as paramount when they aren’t actually under investigation. But so too do the victims have rights. So too do the family of victims have rights. So yes, there are some very, very difficult issues which we’ve got to confront here. But frankly the bottom line is we believe it is a risk worth taking and it is a process well worth doing.

SEVERSON: Police in the UK have resolved murders and rapes and other cases by tracing the perpetrator through a relative’s genetic profile. One case involved a man who had been raping and terrorizing women for 20 years. Known as the “shoe rapist,” police finally discovered who he was when a DNA sample from one of the rapes was a close match to his sister, whose DNA profile was in the data base for a minor infraction.

Mr. LAKE: The way that we operate in the United Kingdom is that unless there is some other substantial evidence the use of DNA on its own will not be run by the Crown Prosecution Service, the equivalent of your state prosecutor. They simply will not entertain running on the basis of DNA evidence alone.

SEVERSON: U.S. authorities say they will also require other supporting evidence. But opponents argue that the FBI has been known to overstep its bounds in other investigations. And even though agents may be held accountable for overzealous prosecution, by then the damage to someone’s reputation has been done.

Ms. WILSON: I have not been in trouble a day in my life. They could come to my family members and even me. It is violating rights of innocent people.

SEVERSON: Pearl no longer needs to worry about her son’s DNA coming back to haunt the family, because Maryland has become the first state to ban familial testing. But several other states, with California in the lead, intend to approve familial searching, and that appears to be the national trend.

For RELIGION & ETHICS NEWSWEEKLY, I’m Lucky Severson.