Survey Finds Wide Public Support for Nationwide Study Of Genes, Environment and

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Survey Finds Wide Public Support for Nationwide Study Of Genes,

Environment and Lifestyle

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Four in five Americans support the idea of a nationwide study to

investigate the interactions of genes, environment and lifestyle, and

three in five say they would be willing to take part in such a study,

according to a survey released today. The research was conducted by

the Genetics & Public Policy Center at s Hopkins University with

funding from the National Human Genome Research Institute (NHGRI) of

the National Institutes of Health (NIH).

In a plenary session at the American Society of Human Genetics'

annual meeting in Philadelphia, and in a paper published in the

advance online edition of Genetics in Medicine, researchers presented

results of their survey that sought public opinions about the

prospect of a national study that would bank DNA and other biological

samples from thousands of volunteers and track the volunteers' health

over time. Researchers often refer to this type of study as a cohort

study, with one of the best-known examples being the Framingham Heart

Study in Massachusetts.

" Our survey found that widespread support exists in the general

public for a large, genetic cohort study. What's more, we found

little variation in that support among different demographic groups, "

said Kaufman, lead author of the paper and project director at

the Center.

Various experts have suggested initiating a nationwide cohort study

to address the many unanswered questions about how genetic and non-

genetic factors interact to influence risk of common diseases. As

currently envisioned, such a study might collect DNA and other

samples from at least 500,000 people who are representative of the

U.S. population and then follow them over many years to see how their

genetic make-ups interact with lifestyle and environmental factors to

affect their health.

The online survey of 4,659 U.S. adults was conducted between December

2007 and January 2008. When asked about their support for and

willingness to participate in a large genetic cohort study, 84

percent of respondents supported the study and 60 percent indicated

they would definitely or probably participate in such a study if

asked.

Survey respondents were carefully selected to reflect the demographic

makeup of the United States. No significant differences in support or

willingness to participate were observed between whites, Hispanics,

African Americans and Asians. American Indian and Alaska Native

respondents expressed less support for the study (65 percent), but

were just as likely to be willing to participate (63 percent) as

other respondents.

Center researchers also looked at what factors might increase

people's willingness to take part in a large genetic cohort study.

According to the survey's results, the factors with the greatest

impact on willingness to participate were a commitment to returning

research results to individual volunteers, and an offer of

compensation. On the flip side, three in four respondents said they

would be less likely to participate if they could not receive their

individual research results.

When asked to rank the possible benefits of participating in a

national genetic cohort study, more than two-thirds of those surveyed

considered " receiving information about my health " to be a very

important benefit. In contrast, only about one-third said monetary

compensation would be very important.

" The public's eagerness to receive individual research results

suggests that the research community may need to reassess its stance

of `protecting' research participants from their data and look for

practical ways to return such results, " said Kathy Hudson, the

paper's senior author and director of the Center. However, Hudson

noted that even if individual results were not returned, more than

half of people surveyed said they probably would still go ahead and

participate in a nationwide genetic cohort study.

Sample selection and online administration of the survey was managed

by the consumer information company Knowledge Networks under the

guidance of the Center. The margin of error for the public opinion

portion of the survey was plus or minus 1.6 percent.

Kaufman, D., J. , J. , and K. Hudson. 2008. Subjects

matter: a survey of public opinions about a large cohort study.

Genetics in Medicine 10: 831-839.