Summary

Nov. 4, 2005--According to the second annual CGAT survey conducted by Cogent Research in Cambridge, Massachusetts, much of the American public is interested in using their personal genetic information to optimize their health.  However, that enthusiasm could be severely dampened by concerns regarding privacy, emotional burdens, and moral issues.  Acceptance of genomics is thus at a crossroads—where industry actions, government regulations, and consumer advocacy groups will shape how consumers ultimately perceive and benefit from this emerging field.  (Note:  For the purpose of this public survey, "genomics" is defined as "using individual genetic information to understand and optimize health.")  To build public support for genomics—particularly genetic testing—industry and government need to work together to increase knowledge of the benefits of genomics, offer services that target treatable diseases, advocate privacy protections, and mitigate potential moral concerns.

Objectives

The Cogent Research Syndicated Genomics Attitudes & Trends Survey (CGAT) has been taking the public"s pulse regarding the issue of genomics on an annual basis since 2004.  CGAT explores public awareness, understanding, favorability, and interest in genomics.  The survey also examines the catalysts for and barriers to public support.  Additional data (not presented here) provide insights into the public's preferences for related service delivery, as well as the most effective communication strategies.

Methods and Analysis

The data described here represent the second wave in the annual CGAT survey.  Each wave utilizes identical sampling and collection methods, as well as parallel questions for effective comparison and tracking.  Data for this wave were collected in January 2005, via a web-based survey consisting of 205 questions.  Just over 1,000 people responded to the survey.  Using both balancing and weighting techniques, the sample was designed to reflect the U.S. population in terms of key demographics, including education, age, income, and gender.   

The findings presented here rely primarily on univariate analyses and cross-tabulations.  The data were analyzed according to the demographic profile of the population, including primary characteristics (e.g., age, income, gender), health-based characteristics (e.g., health history, current health status), and attitudinal characteristics (e.g., receptivity to medical advances). 

Awareness, Interest, and Drivers

Public awareness of genomics is in its early stages; it is quite broad but not deep.  As shown in Chart 1, 75% of the public have heard or read something about genomics (defined as "using individual genetic information to understand and optimize health"); however, only 4% have read or heard a lot about it.  Further, among those who have read or heard something, only two-thirds (69%) can recall any specific details about genomics, and most frequently, they can recall only the basic relationship between genetics and health. 

That said, there is a small core of people who fully understand the concept of genomics.  Five percent of those who have heard or read something about genomics could explain that genetic testing can facilitate early diagnosis, and 3% noted that genomics can help customize treatments.  Although most adults do not fully understand the issue, the fact that the vast majority have some level of awareness indicates they are cuing into the topic and are thus primed for receiving more information.  There is some urgency for making additional information available to those who are less informed because the survey data suggest some consumers may be vulnerable to misinformation and manipulation as the issue moves forward.  

Although knowledge is limited, the American public is generally favorable to the idea of genomics.  More than half are favorable toward using individual genetic information to understand and optimize health, and this enthusiasm extends to applying personalized medicine in areas ranging from drug efficacy to drug safety to disease prevention.  Furthermore, the American public is interested in using genomics personally; they do not simply approve of its availability for others.  Half of the public (48%) are interested in using their "genetic information for the purpose of understanding and optimizing" their own health.  This same level of interest is seen across all major demographic groups, as interest in applying genomics to health does not drop below 40% in any key individual subgroup (e.g., men or women, high or low income).  

The public is most interested in using genomics when it can be connected to immediate health benefits.  For example, 71% of the public are interested in reducing their risk of specific diseases.  People are even more interested if the test results could indicate someone was certain to get a disease.  By contrast, people are less interested in using genomics when test results will tell them that they carry the relevant gene but not whether they will develop a disease.  Furthermore, the public is particularly interested in using genomics to target diseases that are treatable.  Thus, one important conclusion is that interest in genomics, and in personalized medicine, is driven by the ability to detect diseases for which there are existing treatments.

In regard to pharmacogenomics specifically, half of adults (51%) are interested in using genomics to make informed choices about prescription drugs.  Moreover, interest is high in three specific areas: efficacy, safety, and prevention.  As can be seen in Chart 2, 60% or more of the public are interested in using genomics to determine which drugs would be most effective for them, whether they will have an adverse reaction to a drug, or whether to take a drug preventively.  This positive perspective and direct personal interest reinforce the notion that the public is primed for more information and access to genomics-related services.

Concerns and Drivers

Despite the strong foundation for a positive perception and interest in genomics, privacy concerns, emotional drawbacks, and moral issues have the potential to limit public enthusiasm or even become the flash point for a negative shift in public opinion.  These challenges make it imperative for industry to develop strategies to address these concerns.  Fortunately, public awareness is still in its early stages and therefore malleable.  

Privacy.  One of the survey's most striking findings regards the number of people who are concerned about privacy issues.  Two-thirds of the public (68%) are concerned about how personal genetic information would be stored and who would have access to that information.  One-third of the public (32%) say this concern would actually prevent them from having a genetic test performed.  Thus, concerns about privacy are both widespread and deep. 

Privacy concerns derive from the fact that 32% of the public see genetic tests as more sensitive, and thus more personal, than other kinds of medical tests.  Specifically, half (51%) are concerned that their "DNA sample may be used for tests other than ones [they] have authorized."  More generally, the public is worried about "misuse."  Nearly half (46%) say they are "torn on the use of genetics [because] the potential benefits are incredible, but the potential for misuse is considerable." 

Some concerns about misuse relate to the public's mistrust of health insurance companies.  More than two-thirds of the public agree with the statement that insurance companies will "do everything possible to use genetic information to deny health coverage" (68%) and, more specifically, that insurance companies will "use information to deny coverage for drugs people need if their genetic profile indicates a low chance of responding" (69%).  For these and other reasons, the American public is much less interested in using genomics services if their test results would become part of their medical record and be obtainable by insurance companies (61% are less interested).  That said, the public does want insurance companies to pay for genetic tests.  Fifty-three percent say this would make them more interested in using genomics. 

Government regulations and protections are an important response to privacy concerns.  In this case, consumers are looking to the government to protect their privacy, as shown by the fact that 72% of the public who believe that government "should establish specific laws and regulations to protect the privacy of genetic information."  Either the public is unaware of the existing protections, or they do not believe they are extensive enough.  Either way, there is reason to believe that key protections could alleviate concerns sufficiently to raise interest given that 64% would be more interested in genomics if they were "assured by law that no one could access [their] DNA information without [their] consent." 

The desire for government intervention is limited, however.  While the American public wants government regulation to protect privacy, they are adamantly opposed to the government having access to their genetic information.  Only 24% of the public believe the "government should create a national database of DNA information for the future health of all Americans."  Perhaps more poignantly, only 1% believe a government health agency should receive a copy of the results of their own genetic tests.  Industry will need to strike a balance between government regulations and industry operations.

Moral Issues.  As is true for many new technologies and health issues, there is a segment of the population that holds deep moral reservations about genomics.  Fortunately, in the case of genomics, this group is a minority.  As can be seen in Chart 3, 23% of the public agree that "the recent advances surrounding the use of genetic testing make me uncomfortable from a moral standpoint."  Slightly fewer (16%) agree that "meddling with our genes and DNA is trying to play God, [and that] scientists, researchers and doctors should stay out of it altogether."  Similarly, only 15% agree that genetic testing should be stopped because of a perceived link to the more controversial areas of cloning and altering genes. 

One key danger is that an additional third of the public have not taken a stand on these issues.  That is, they neither agree nor disagree with these statements.  These "fence sitters" may be particularly vulnerable to moral arguments.  If they were persuaded and joined the concerned minority, the total group would form a near majority.  On the other hand, should fence sitters be persuaded to join supporters, they would represent a majority that is receptive to future genomics developments. 

The public is also grappling to some extent with the emotional burden that genetic information can bring.  Emotional concerns may, in part, signal a recognition of the significance—or even value—of genomics.  However, there is also some evidence that the emotional burden may be "too" great, thus precluding interest.  For example, 22% of the public agree that knowing their genetic profile "is too great a responsibility because it impacts [them], [their] spouse, and ultimately [their] children."  Similarly, 29% agree that it would be "too depressing to know [they were] going to get a disease, particularly if there is nothing [they] can do about it. " (Note that this finding also reinforces the appeal of genomics addressing treatable diseases.)  Fortunately, these concerns are weighty for only a minority of the population, and industry may be able to pursue strategies to lessen this burden. 

Recommendations

Public support for genomics is at a crossroads.  Critical steps are necessary to keep overall consumer interest positive and to prevent a groundswell of opposition.  The following steps are important not only for individual companies but also for the entire pharmacogenomics community: 

A.  Deepen the Public's Understanding of Genomics.  Unlike some other areas of scientific discovery, the most knowledgeable segments of the public are genomics' strongest supporters.  These people are the most favorable generally and the most interested personally.  Increasing the knowledge level across the board should not only increase receptivity but could inoculate them against criticism of genomics.  Finally, increasing knowledge about the benefits of genomics may change the public's cost-benefit analysis regarding the emotional and financial burdens associated with genomics.

B.  Link Testing with Solutions.  Public interest in genomics is strongest where there are viable treatment options.  To increase support for genomics overall, industry should focus initially on highlighting effective testing-treatment combinations.  Once they have tangible evidence of genomics' benefits, the public is likely to be more receptive to tools that provide results with lower probabilities.  This strategy may also alleviate the emotional concerns about genomics, as the data demonstrate that dealing with uncertain treatment options is especially difficult for the public. 

C.  Advocate for Privacy Protections—with Limited Government Involvement.  Protecting the privacy of the public—and thus protecting them from genetic discrimination—is critical.  Concerns in this area are a current and potentially increasing source of hesitation.  The public is demanding government protections—regulation of industry, explicit protection from genetic discrimination, and government support for patient rights to control their own results.  However, as is true in many health policy areas, they are also mistrustful of excessive government intervention and do not want government directly involved in the testing or storage of results.  Thus, the final policies must strike this critical balance.

D.  Proactively Frame Moral Issues to Industry's Benefit.  Currently, only a small minority of the public believe moral concerns outweigh the benefits of genomics.  However, these individuals are committed because their concerns go to the core of their religious beliefs and concerns about technologies.  Moreover, a sizable minority are relatively vulnerable fence sitters.  Unless negative messages are contained or sufficient positive messages reach the public, the fence sitters could be swayed by concerns, and public support could erode significantly.

Christy White and John Meunier, are Principals and Gillian SteelFisher is a Senior Consultant at Cogent Research, Cambridge, MA.

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