A study released in January found that Americans are more concerned than ever about their genetic privacy, even after the passage of the Genetic Information Nondiscrimination Act (GINA). The survey was the fifth Cogent Genomics, Attitudes & Trends study (CGAT), a recurring study conducted by Cogent Research, Cambridge, Massachusetts. Christy White is a Principal at Cogent Research.
What was the original impetus for these studies?
Ironically enough, I think it was an article that was written in the Times about Bill Gates, of all people. He wanted to create software that would help people manage their genetic information. It was in the very early stages and there wasn't a lot of talk about it, but from the article you could really see that this was going to change medicine. It was very exciting and interesting-and actually a sort of apropos story. Here we are five or six years later, and from Americans' perspective, they don't feel that a lot has changed. They're not really aware of some of the advancements that have been made and some of the success stories out there, partly because they are sort of few and far between when it comes to the application of genomics. It has yet to really impact Americans, and from the data that we have, it appears that they are a little bit hesitant about getting genetic testing. They can see the promise and are very interested, but on the other hand, they say, "That's kind of a scary prospect, getting my genetic information, having it be in my medical record, and then not knowing who might get access to that information."
Did you find any attitude shifts after the passage of GINA?
No. In fact, the last time we did this study was shortly after the passage of GINA, and you would think that if at any point in time there would be an attitude shift it would be then; but there really wasn't. There was basically no change. We were in the field collecting data right after a media flurry, if you can call it that, of information about GINA. Over a year later, we're seeing no changes. It's been basically flat at about 18 to 16 percent since 2006.
Is that eighteen to sixteen percent saying that they are aware of laws that protect their privacy?
Absolutely. We ask, "as far as you know, are there any laws that currently protect the privacy of your genetic information?" There wasn't a law when we asked this in 2006, and 18 percent of people said yes. Fast forward to 2010, a year and a half after the passage of GINA, and it's at about 16 percent. Absolutely no increase.
Has there been any shift in terms of how different demographics are answering?
No, it's basically the same folks. It was pretty much across the board in terms of who was aware and who wasn't aware.
There isn't some subset that is more likely to know about GINA?
There are some differences by demographic characteristics, but they are minor. Slightly more Americans with a graduate or professional level education are aware of GINA (25%) compared to those with less education (15%). Additionally, Americans aged 18 to 34 are more likely to be aware than those over 55 (18% vs. 11%).
One especially surprising finding is that 81 percent of physicians said they weren't familiar with GINA.
That was really kind of shocking. We know because we do a lot of work among physicians that even when you ask them about advancements related to, say, clinical trials, you'd be shocked at how some of them won't even be up to date on clinical trial data that affects the area that they are responsible for. But they have so much that they have to keep abreast of, and they are trying to prioritize the knowledge that they can act on today.
Do you think some of the publicity about GINA might have contributed to people being more skeptical because it exposed people to concerns they might not have thought about before?
I think what happened was a lack of information. One of the questions that we ask is "where have you heard or seen information recently?" In 2008, 55% of Americans said that they had heard something on a television about genomics, and this year it dropped down to 39%. We saw a similar drop in newspaper and magazines: in 2008, 39% of people said they had read a newspaper or magazine article about genomics, and this year we only had 27%.
In this case, no information isn't good information. I would agree with you, though, that some of the stuff that is out there about genomics is not necessarily favorable. There was that book-The Immortal Life of Henrietta Lacks-which made the bestseller's list. Then there was the story about the overthe- counter genetic test that was going to be sold in drugstores and was pulled off the shelves. People either heard nothing or they didn't hear anything great.
I think the other big reality, though, is that you're looking at pre-recession and post-recession numbers. There are a couple of questions in here where you see stress popping up. There is an increase in the number of people who say it would be too depressing to have this information, and that they would be concerned about sharing it with their family members, particularly if they couldn't do anything about it. So I think pre-recession, people were saying "Sure, bring it on, tell me what I can do, I want to be proactive." I think now people are saying, "I've got a lot on my plate, and I don't necessarily need to get information -particularly if I can't act on it." So we saw the stress factor popping up.
One of the stated purposes of the CGAT is to explore the barriers and catalysts to adoption of genomics-based medicine. Are you finding that those barriers and the catalysts are changing?
One of the things that we did see is that more people were citing benefits related to the ability to prevent disease. A few were citing benefits in terms of treatment and cures.
In terms of barriers, I mentioned emotional stress, which jumped from 14% in 2006 to 23% in 2010. And interestingly, moral concerns have declined from 13% down to 6%.
The emotional stress could be coming from having information you can't act on, having information you can't afford to act on, or being concerned that the information may get outside of your control and be used in ways that you didn't authorize.
The other major barrier being privacy concerns, then, especially among those who aren't aware of GINA?
We ask folks "If you were assured by law that no one could access your information, would you be more or less interested?" And actually 64% of the people who were unaware of the protections said that they would be more interested, and 34% of them said they would be much more interested.
Do you think that educating people about GINA would qualify as that assurance?
That's a great question. I think that it certainly couldn't hurt, because today people are completely unaware of it, and there are some good protections in that law. I don't know if you pick up the entire 64% because some people may just say, "I don't believe it," or "it's not rigorous enough."
I think it's kind of ironic, too, that SACGHS (Secretary's Advisory Committee on Genetics, Health, and Society) just disbanded, with the notion that they had accomplished their goals when they got GINA passed; and I think that maybe they stopped short of the second piece of that, which was to make sure that people were aware that they are protected. It's great that people are protected, but it would be even better if they were aware of that.
This lack of awareness is not good for industry, it's not good for the economy, and it's not good for public health, in the long run, if you believe in genomics. It doesn't appear that the government is going to do any sort of broad-based consumer education work. They really haven't done anything to get the word out about GINA and it doesn't appear that they are going to. So one of our points is that someone needs to take up the gauntlet; and it's in industry's best interest, really, to do that.
How would you like to see industry go about that?
I think that if industry were to spend more time educating physicians, we could get the word out that physicians are prepared, they're ready to talk to you about genomics, they understand it, and this can really make a difference in your quality of life and longevity. But industry needs to take seriously the fact that physicians are in need of education.
Only 17% of Americans believe that their physician is up to date and knowledgeable on genomics. That's a paltry number. Only 20% think that physicians can talk about genomics in a way they can understand, and only a third think physicians would take the time even if they could do it. And elsewhere in this data, only 4% of respondents had talked to their doctor about genomics. There aren't a lot of these conversations going on right now.
If you were to have to predict what might change next year, do you see any continuation of these trends?
I think that unless there is more communication about protections and some of the exciting stuff going on, I think it's going to continue. I think there will be further deterioration.