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Survey Shows Declining Public Interest in PGx, Poor Grasp of Genomics Issues


By Turna Ray

Perhaps due to difficult economic conditions and the negative spotlight on consumer genomics from a regulatory and congressional standpoint last year, the public's interest in pharmacogenomics applications declined compared to previous years, a recent report suggests.

A survey of 1,000 US residents conducted by Cogent Research found that 58 percent of respondents are interested in using genetic information to identify which drugs will work best for them in treating a disease; 65 percent would like such data to gauge adverse reactions to a drug; and 56 percent would use genetics to determine whether to use a drug preventatively. However, this is a drop from two years ago, when the Cogent Genomics, Attitudes & Trends Study was last conducted, which found participant interest for the same PGx applications to be 65 percent, 71 percent, and 63 percent, respectively.

In general, people's interest in using genomics to inform their healthcare decisions has remained around 50 percent for the last five years, the survey shows. However, the proportion of people who say they have limited or no interest in using genomics in their personal lives has increased since previous years, from 15 percent in 2008 to 20 percent in 2010. "Americans' awareness of using genetic information for predisposition and diagnosis mirrors that for genomics in general, however awareness of use for treatment selection lags far behind," Cogent states in its latest CGAT report, conducted in partnership with healthcare communications firm CAHG.

In the life sciences industry, government, and academia, genomics and personalized medicine continue to be hot topics. However, the survey underscores the fact that this interest is not necessarily shared by the lay public.

Both the 2008 and 2010 CGAT surveys found that 96 percent of survey participants had not spoken about their genes or genetic testing with their doctors. The number of US residents projected to have had a genetic test, mostly related to pregnancy issues, was around 11 percent last year.

Direct-to-consumer marketing of personal genome services by companies such as 23andMe and Decode Genetics has contributed somewhat to increasing awareness of genomics among the public. According to the CGAT survey, 17 percent of respondents said they have heard of personal genome services — an increase over 2008, according to Cogent.

Furthermore, when asked to select phrases that best explain what it means when these companies say they provide information about the "risk of getting a specific disease based on DNA," 54 percent said it meant that these services could "identify my chances of getting a specific disease (for example, that I have a 60-70% chance of getting the disease)." Around 47 percent of those polled said that consumer genomics firms can tell them whether they are at greater risk than most people, but not the exact level of their individual risk.

"What's at the core of all of this, when we look at the report across the board, is that there has been a general stalling of the marketplace," Cogent Research Principal Christy White told PGx Reporter this week. "Over the past several years, we've been noticing some steady increases in interest and favorability [toward genomics health applications] and all of that sort of came to a grinding halt last year."

In particular, in response to the question, "How much, if at all, have you heard or read about using individual genetic information to understand and optimize health," most respondents — in the neighborhood of 50 percent — said "a little" for the past five years, but the number who said they have heard "a lot" or "a fair amount" declined in 2010 compared to prior years.

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"It's the first time we've seen a drop in the number of people who say they have heard about genomics," White observed. "To us who follow genomics, it seems like there was a lot of coverage on genomics, but maybe not to the general public … Also, some of the stuff they were hearing may not have been that positive."

There were a number of high-profile genomics stories in 2010, including the US Food and Drug Administration stopping Pathway Genomics from selling saliva collection kits for its personal genomics services at Walgreens and CVS; a congressional hearing to discuss a report on consumer genomics which found that the information provided by these services lack accuracy and utility; and ongoing litigation challenging companies' ability to patent genes. The 10-year anniversary of the completion of the Human Genome Project also spurred a number of articles in the mainstream press questioning whether genomics has lived up to its promise.

Perhaps due to the increased regulation of the consumer genomics industry, 56 percent of those surveyed said that such genome scans should not be sold directly to consumers through websites, pharmacies, or other retail outlets. Meanwhile, 16 percent said that no consumers should be allowed to get these tests regardless of FDA approval and 28 percent said they weren't sure how they felt on the topic.

Greater awareness about some of uncertainties around genomic medicine has also resulted in more people believing that using genomic information to make healthcare decisions will add to their stress (23 percent in 2010 vs. 20 percent in 2008). In addition, consumers continue to fear that genetic information could be used against them (17 percent in 2010 vs. 18 percent in 2008).

Contradiction this finding is a study published in the New England Journal of Medicine which surveyed more than 2,000 customers of a DTC genomics service and found that they reported no marked difference in stress based on their test results (see related story, this issue).

The difficult economic climate may also explain why more people believe that genetic information will add stress in their lives. "People have bigger problems today than they had pre-recession," White noted. "While their health is certainly important to them, they're certainly not thinking as proactively and preventatively as they were a few years ago." Certainly, over the last year, several drug and diagnostics firms have noted that due to the economic downturn and job losses leading to loss of insurance, fewer people visited their doctors (PGx Reporter 11/03/10).

When Cogent drilled down to respondents' specific concerns regarding genetic testing, one of the more alarming findings was that 71 percent of people expressed concern about how their genetic information will be stored and who will have access to it — a 6 percent increase from 2006 and a three percent increase from 2008, the year the Genetic Information Nondiscrimination Act was passed.

GINA protects individuals from employment and health insurance discrimination based on their genetics; however there are limits to the types of genetic information the law protects. For example, GINA does not restrict life insurance companies from asking for information about individuals' genetics and family history, and the law does not keep life insurers from factoring this information into coverage decisions. Furthermore, while GINA restricts insurers from using a person's genetic predisposition for a disease to deny coverage for treating a disease that has not yet manifested, the law does not bar payors from refusing to pay for treatments for pre-existing genetic conditions or deny coverage for pharmacogenetic treatments for a manifested disease.

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It seems that an increasing number of people would forgo genetic testing based on their privacy concerns. In 2010, 37 percent of respondents said their privacy concerns would preventing them from getting a genetic test, whereas 30 percent people surveyed in 2008 said their privacy worries would keep them from getting genetically tested. Those surveyed seemed particularly troubled about health insurance companies (53 percent), life insurance companies (50 percent), and the government (51 percent) gaining access to their genetic information.

Furthermore, 56 percent of respondents worried that their DNA sample might be used for purposes not authorized by them. In 2008, 2006, and 2005, 49 percent, 51 percent, and 51 percent, respectively, cited this concern. "Americans are more concerned today than at any other point in the past years that their DNA sample would be used without their consent," Cogent said in the report.

Ultimately, a majority of people continued to believe, similar to previous years, that insurers will "do everything possible to use genetic information to deny health coverage," and that insurers will also use such data to "deny coverage for drugs people need just because their genetic profile indicates they might have a low chance of responding to the drug."

Education Needed

In White's opinion, one possible reason for rising consumer concerns about the privacy of their genetic data may be due to the fact that personalized medicine stakeholders did a good job educating members of congress about GINA before it was passed, but did not follow through with educational efforts for the general public after the bill became law.

Genetic Alliance, a non-profit that worked to lobby congress for a decade to pass GINA, launched a website after the passage of the law to educate the public, called GINAHelp. The website explains how the law might apply to health insurance companies and employers, and allows people to e-mail questions about GINA.

"We, as a nonprofit, are terrific at creating these resources, but there are no funding sources for these tools to be disseminated and propagated," Genetic Alliance CEO Sharon Terry told PGx Reporter.

Another group that helped push GINA through Congress was the Genetics and Public Policy Center at Johns Hopkins University. After the GINA bill was passed, GPPC launched "Project GINA," a web-based effort to inform the public about the extent and limits of the law in protecting people's genetic information (PGx Reporter 08/29/08).

"In focus groups we've done, people are not reassured by GINA," Dave Kaufman, GPPC's director of research and statistics, told PGx Reporter. "This doesn't come as a surprise. Consider how long [the Health Insurance Portability and Accountability Act] has been around." GPPC has found that more than 75 percent of people are still generally concerned about the privacy of their medical information, Kaufman pointed out.

He attributes people's reservations about genetic information discrimination to the fact that many haven't heard of GINA. Also, "when you explain the law, people aren't distrustful of GINA specifically, but they are skeptical of the ability of laws and the government to protect the little guy from large institutions like insurance companies who they feel will 'do what they want,'" Kaufman said.

Additionally, as an effort is underway in Congress to repeal provisions of the healthcare reform law, people understand and fear that current legal protections can go away. "Many people see the laws (especially new ones) as things that can come and go," Kaufman said. "We have heard that GINA could be abolished."

In past discussions with members of the public, GPPC has found that some people are even confusing GINA with provisions under the health care reform law that would protect people against discrimination based on pre-existing conditions. In this context, some members of the public GPPC has spoken to "told us that they thought they heard GINA might be repealed," Kaufman said.

Ultimately, however, the Cogent survey suggests that despite people's reservations about the use of their genetic data, if respondents hypothetically did receive genetic testing, the majority are willing to discuss the results with their doctors (88 percent). Furthermore, an increasing number of people said they would make lifestyle changes (52 percent in 2010 vs. 45 percent in 2008); get more check-ups (62 percent vs. 55 percent); take a preventative drug (28 percent vs. 23 percent); or consider preventative surgery (19 percent vs. 13 percent).

The survey shows that while "people are very interested in the government stepping in to protect them, they're not so interested in the government learning too much about them," White said.

Have topics you'd like to see covered in Pharmacogenomics Reporter? Contact the editor at tray [at] genomeweb [.] com.