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Survey: PGx Is Viewed Favorably in the US, But Barriers Will Remain Without Education

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A recent survey by Cogent Research suggests that the public is broadly receptive to the use of genomics in healthcare, provided privacy is strongly protected.

The group's research also suggests that the public's attitudes on pharmacogenomics are more positive than might be assumed from previous opinion surveys concerning other commercial endeavors involving genetics, such as genetically modified food. In addition to privacy, Cogent highlights two other public concerns that, if properly addressed, stand to broaden interest and acceptance — the use of genomics to discover risks of health conditions having no treatments, and moral concerns about the motives and directions of genomic research.

Cogent presented its research at a PMC-sponsored forum in Washington, DC, early this month. The survey included 1,018 respondents, with a margin of error of plus-or-minus 3.1 percentage points.

"In any one demographic group, interest doesn't drop below 40 percent," Christy White, principal of the Cambridge, Mass.-based market research and consulting firm, told Pharmacogenomics Reporter. The company asked about interest in using a drug proactively based on genomic information, and more than half of the sample population was interested.

The Cogent survey also looked at attitudes toward the use of genomic data to predict an adverse drug reaction, and to inform the choice of possible drugs. "In all three of those, more than half of the population said they would be interested — that means there's a lot of opportunity for pharmaceutical companies and biomedical companies there," White said.


Nearly 70 percent of Americans say that they think insurance companies will do everything possible to deny them coverage or deny them a specific drug.

Awareness of pharmacogenomics has remained basically unchanged since 2004, said White. "That's one of the reasons I talk about the need for industry to do more communication, because from last year to this year, we didn't see any increase in Americans' awareness," she said. "Seventy-five percent of Americans say they have heard at least something about genomics," but only four percent say they have heard a substantial amount about the field, she explained.

Increasing understanding will increase favorability, because those most familiar with the technology are the most favorable, White said.

These attitudes are basically consonant with a June 2001 Harris Interactive poll that found 84 percent of 1,000 US respondents surveyed felt genomics would have a positive impact overall.

In the Cogent study, the 57 percent of Americans with a favorable disposition toward pharmacogenomics outstrips the 27 percent approval for genetic engineering found by a Rutgers University-Cook College survey published in January. That survey of 1,200 Americans also found 49 percent of respondents held unsure or neutral attitudes toward genetically engineered food, a result that meshes well with the finding that 70 percent of respondents did not believe that gene transfer is even possible. That study was published in the report Americans and GM Food: Knowledge, Opinion & Interest in 2004 by its sponsor, the Food Policy Institute.

But despite these positive public attitudes relative to other types of biotechnology, some industry observers say there is still a long way to go in raising public awareness of genomics. "A number of people believe there's a growing social Ludditism — people are turning away from believing that science and medicine can make their lives better," said Wayne Rosenkrans, director of business strategy and external scientific affairs at AstraZeneca Pharmaceuticals, during a panel discussion last week at the IBC Molecular Diagnostics and Personalized Medicine conference in Boston.

Rosenkrans told Pharmacogenomics Reporter that the problem has led to reluctance among clinicians to adopt genomic technologies, suspicion among the public about the technologies, and sluggishness of payors in keeping current with technology. "We've got a large task ahead of us" in explaining the role of pharmacogenomics in medical and healthcare practice, he said. Rosenkrans is also a member of the board of directors of the Personalized Medicine Coalition, a Washington, DC-based policy group, although he was not speaking on behalf of the coalition.

It is not clear whether a general anti-technology sentiment is spreading across the country, though other members of the Molecular Diagnostics panel expressed similar concerns.

Privacy

"There's a lot of concern about employers, the government, and insurance companies in particular misusing the information — nearly 70 percent of Americans say that they think insurance companies will do everything possible to deny them coverage or deny them a specific drug," although the majority also want insurers to pay for testing, said White. Only 1 percent of survey respondents said the government should have access to genomic information, while wanting the government to protect genetic information, she added.

A second Harris Interactive poll from July 2002 found that only 39 percent of 1,013 US respondents would want their insurance company to see the results of a genetic test for a serious disease.

Although concerns about privacy might be allayed by changes in the law, public skittishness about such diagnostics might simply be a question of education. "One question we didn't ask — and I wish we had — is [whether respondents] are aware of the current protections in place," White said. Because respondents often express dismay at a perceived lack of government protection, she assumes most Americans are not aware of current privacy guidelines.

"Even though there are some concerns about [data] misuse, it largely will not prevent [patients] from going ahead and getting a test if it can benefit them in some way," White said.

The Health Insurance Portability and Accountability Act Privacy Rule, along with certain administrative simplification rules, govern the handling of some genomic data by "health plans, health care clearinghouses, and [by] any health care provider who transmits health information in electronic form in connection with transactions for which the Secretary of [Health and Human Services] has adopted standards under HIPAA," according to a DHHS summary of privacy provisions associated with the act. The Privacy Rule "protects all 'individually identifiable health information' held or transmitted by a covered entity or its business associate, in any form or media, whether electronic, paper, or oral," the summary continues. There are no restrictions on the use of de-identified health information.

"Privacy is a huge issue" that affects genomic studies beyond the individual patient level, said Rosenkrans. "If you're going to be HIPAA compliant, it's very difficult" because individual state agencies often have much more stringent privacy rules than the federal HIPPA, he said.

While existing protections might be enough to satisfy concerned citizens, ignorance about these protections has the potential to aggravate the public to the detriment of personalized medicine. "If there is ever even one instance in which someone said their information was misused, it could be a big problem," White said.

The pharmacogenomics-education level of doctors, which Rosenkrans discussed at the conference, is also a major concern of the personalized medicine industry. And it is another potential barrier about which there is little hard data. Unfortunately, Cogent did not separate doctors out of its group of respondents, but the company is planning to conduct a survey of physicians' attitudes toward genomics this fall, White said. The company is currently looking for sponsors, and expects to have data "around January," she added.

The impact of physician education on personalized medicine cannot be understated. "We do a lot of work for pharma, and you'd be surprised sometimes what physicians do and don't know about specific things," said White. "Our study among consumers shows that nearly all Americans will definitely consult with their physician before having a genetic test — even if it is an at-home genetics test, they're going to ask their doctor first, what the doctor thinks."

Of Ignorance and Bliss

The phenomenon is familiar to ethicists and pollsters — patients often don't want to know about disease risks when there is no way to manage that risk. The same principal operates in genomic testing. "They want to know that they're definitely going to get it," said White. "They don't want to be told they're at high risk." When asked whether they would want to be tested for a disease they are certain to contract, 50 percent of respondents say they are likely to get a genetic test. But for a certain health condition that has no treatment, that percentage drops to 26 percent.

The July 2002 Harris Interactive poll on attitudes about genetics found that only 49 percent of respondents would likely ask for a free genetic test for untreatable health conditions, compared to 81 percent in the case of a treatable condition.

Moral Concerns

The third major concern affecting public favorability toward pharmacogenomics includes a collection of apprehensions broadly termed "moral concerns" by White and her colleagues. "Today, about one quarter of Americans have some moral issue with genomics in general, but an additional third of Americans are kind of sitting on the fence," she said.

Moral concerns over genomics have the most overlap with concerns about genetically modified foods, White said. The issue should weigh heavily on the educational plans of pharmaceutical and diagnostics companies "to make sure that the climate doesn't turn into the debate that's happened with genetically modified foods" and other contentious science-related issues "instead of people staying focused on the benefits to consumers," she said.

— Chris Womack ([email protected])

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