StatementB_Final

Supporting Statement B
for
Genomics and Society Public Surveys

March 13, 2014

Submitted by:
Laura M. Koehly, Ph.D.
Senior Investigator
Social and Behavioral Research Branch
National Human Genome Research Institute
31 Center Dr, Room B1B54
Bethesda, MD 20895
Telephone: 301-451-3999
Fax: 301-480-3108
Email: [email protected]

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Table of contents
B.

COLLECTIONS OF INFORMATION EMPLOYING STATISTICAL
METHODS……………………………………………………………..…… 1

B.1

RESPONDENT UNIVERSE AND SAMPLING METHODS ........................................... 1

B.2

PROCEDURES FOR THE COLLECTION OF INFORMATION ....................................... 4

B.3

METHODS TO MAXIMIZE RESPONSE RATES AND DEAL WITH NONRESPONSE ........................................................................................................... 5

B.4

TEST OF PROCEDURES OR METHODS TO BE UNDERTAKEN .................................. 7

B.5

INDIVIDUALS CONSULTED ON STATISTICAL ASPECTS AND INDIVIDUALS
COLLECTING AND/OR ANALYZING DATA ... ……………………………………8

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List of Attachments
(Appearance in Supporting Statement B)

Attachment 1. Flow Chart of Survey Procedure
Attachment 2. Interactive Exhibit Display Prompts
Attachment 3. Screenshot of Survey Website Word Clouds

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B.

Collections of Information Employing Statistical Methods

B.1

Respondent Universe and Sampling Methods

Data collection will occur under the direction of the National Institutes of
Health (NIH) National Human Genome Research Institute (NHGRI) in
partnership with the Smithsonian Institute’s National Museum of Natural
History. The Smithsonian Institute will be involved in recruitment of
participants, as outlined below, but not directly involved in the surveying of
participants. Data collection for this project is anticipated to begin early
2014 and continue through the course of the exhibit, including the time in
which it will travel to other cities across the country. Attachment 1 provides
a diagram detailing the survey procedures.
Adults (18+ years) will be recruited through the exhibit using three
different approaches. First, displays within the exhibit will offer visitors the
opportunity to text responses to questions related to genomics and genomic
information (see Attachment 2). The display includes the URL and a QR
code for the survey website. In addition, texters will be sent an automatic
invitation to complete online surveys and a link to the website containing
these surveys. Text message responses will be displayed on the survey
website in word clouds in an effort to attract potential participants to the
survey website (see, for example, Attachment 3). Second, participants will
also be recruited via a link to the surveys on the National Museum of
Natural History’s exhibit website, unlockinglifescode.org. Third, the URL
for this survey site may be advertised separately through media and social
media channels.

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It is anticipated that visitors to the exhibit or supporting websites will
be of various cultural backgrounds and of different ages and gender.
Inclusion criteria include being aged 18 years or older, ability to complete a
web-based survey, and the ability to read English. The sample will represent
a convenience sample based on the number of visitors to the museum or
supporting websites. Based on a recent Smithsonian Institutes – Natural
History Visitorship Study (conducted over 2010-2011), 80% of visitors were
non-Hispanic white, 10% Hispanic, 8% African American, and 7% Asian
American; 86% were US Citizens and 14% foreign nationals. Gender
balance was equal and average visitor age was 37 years. The majority of
visitors (72%) reported at least completion of BA level education. We
anticipate our sample will look similar to this group. In 2012, 7.6 million
people visited the National Museum of Natural History. If we condition on
this population, we estimate that our recruitment efforts will reach 3% of
these visitors, 80% of whom will choose to complete one or more of the
surveys. The planned sample size is approximately 182,500 participants
completing at least one of seven available surveys. If these anticipated
recruitment numbers are not met, a market research survey company may be
used to recruit participants.

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Table 1. Genomics and Society Surveys: Universe of potential
participants and expected number of respondents.
Population

National Museum
of Natural
History Visitors
Survey Name
Text Responses
(Number of
Visitors Reached)
Total Survey
Responders
Individual
Surveys
Survey: Map
Your Social
Network
Survey: Health
and Genetics
from YOUR
Point of View
Survey: Could
Your Genes
Predict Your
Weight?
Survey: Kids,
Genes, and
Health
Survey:
Celebrities,
Prescription
Drugs & Salmon
Survey: Will
Genome

Universe of
Potential
Participants
7.6 Million

Number of
Respondents

Estimated
Response Rate

228,000

182,500

80%

Number of
Respondents
30,000

30,000

30,000

30,000

30,000

30,000

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Sequence
Information
Change How You
View Yourself?
Survey:
Exploring Our
Identity:
Genetics,
Ancestry, and
Race

B.2

30,000

Procedures for the Collection of Information

Adults (18+ years) will be recruited through the exhibit using three different
approaches. First, displays within the exhibit will offer visitors the
opportunity to text responses to questions related to genomics and genomic
information (see Attachment 2). The display includes the URL and a QR
code for the survey website. In addition, those replying to the exhibit text
questions will be sent an automatic invitation to complete online surveys and
a link to the website containing these surveys. Text message responses will
be displayed on the survey website in word clouds in an effort to attract
potential participants to the survey website (see, for example, Attachment 3).
Second, participants will also be recruited via a link to the surveys on the
National Museum of Natural History’s exhibit website,
unlockinglifescode.org. Third, the URL for this survey site may be
advertised separately through media and social media channels.
There will be no oversampling, stratified sampling, or random
sampling methodologies used. The resulting sample is based on a
convenience sample obtained through the exhibit, supporting websites, or
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other media and social media channels. If anticipated recruitment numbers
are not met, a market research survey company may be used to recruit
participants. In this context, eligible participants will be used based on
random sampling from such companies’ bank of potential participants.
The proposed data collection is a single data collection. There will be
no follow up data collection. Thus, the burden of multiple data collection
points is not relevant for this request. The information will be collected
through an online survey. The use of an online survey reduces the burden to
participants, as they can complete the surveys when and where it is
convenient for them, and will not have to travel to an assessment site. The
burden is also reduced for the NHGRI research staff since assessments will
not be conducted in person and data is automatically saved in a secure
database.
Additionally, upon selecting a survey on the website to complete,
participants will fill out a demographic module before they start the survey.
Upon completion of a survey, participants will be given the option to
complete another survey from the list or to leave the site. If the participant
completes another survey in the same session, he/she will not need to fill out
the demographic form or consent form again since responses will be chained
within a given survey session.
B.3

Methods to Maximize Response Rates and Deal with Nonresponse

Given that this is a series of public surveys related to genetics and genomics,
recruitment of participants through the Smithsonian’s Unlocking Life’s
Code exhibit is aimed at maximizing response rates for those interested in
the role of genetics and genomics in society. The estimated response rate for
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the set of surveys is based on the number of survey responders completing
the demographic module (numerator) divided by the number of unique
texters (denominator). If a market survey research firm is also used to
recruit participants, the denominator will be adjusted accordingly. While it
is possible to reach potential participants by other means (traditional and
social media outlets, word of mouth), it may be infeasible to adjust the
denominator for the response rate to include those reached outside of the text
messaging component of the exhibit or those recruited through the market
research firm, though good faith efforts will be made to do so where
possible. Thus, the estimated response rate may overestimate the actual
response rate. Additionally, the response rate for completing a given survey
relative to the other surveys in the assessment will be computed using the
number of participants completing the survey in question (numerator)
compared to the number of participants completing the demographic module
(denominator). The demographic module will be presented at the front of
the first survey that a given respondent completes. Thus, characteristics of
completers and non-completers can be described and differences in
respondent characteristics across surveys can be ascertained.

Estimated response rates, based on the pool of potential participants
reached through the exhibit text questions, supporting websites, and market
research firms, are 80%. While this estimate is larger than that observed in
other internet based assessments (cf Zhang, 2000; Kaplowitz, Hadlock, and
Levine, 2004), we propose that using this innovative multi-pronged
recruitment approach that targets potential participants through the exhibit
text messaging, QR codes, supporting websites, media and social media

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outlets, and survey marketing companies will maximize the expected
response rate.
Most of the surveys contain psychometrically sound scales, based on
the literature (Campbell, et al., 1996; Crocker, et al., 2003; Crocker and
Wolfe, 2001; Dweck, Chiu, and Hong, 1995; Esplen, et al., 2009; Fagerlin,
et al., 2007; Fitz, Kaufman, and Moore, in press; Han, Moser, and Klein,
2006; Heatherton, et al, 1989; Hooker, et al., in press; Koehly, et al., 2003;
Marcum, Hadley, and Koehly, 2014; McBride, Wade, and Kaphingst, 2010;
Shepperd, Helweg-Larsen, and Ortega, 2003; Utsey and Constantine, 2006;
Weinstein, et al., 2007; Yong, et al, 2013; Vieter, 2001). Additionally, many
items came from national surveys, including NHANES and HINTS. As
such, these should yield reliable and valid data points for the proposed data
collection.
The data to be collected are primarily for research purposes; responses
will be summarized and published in scientific journals as well as made
available to the public through PubMed Central. Responses may also be
used to inform community education programs sponsored by the NHGRI. In
scientific publications, the sampling approach, response rates, and
characteristics of responders, non-responders will be fully described in order
to best represent the characteristics of the sample. Additionally, the
Smithsonian Institutes has basic demographic information about their
visitors that can be used to assess how the obtained sample differs from the
universe of adult museum visitors.

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B.4

Test of Procedures or Methods to be Undertaken

The online surveys were pre-tested by at most 5 respondents per survey with
varying levels of educational attainment, race/ethnicity, and gender.
Revisions were made to the survey to facilitate understanding, ease of use,
and to estimate the time burden for each survey. These revisions were made
to the surveys prior to submission of this application.
B.5

Individuals Consulted on Statistical Aspects and Individuals
Collecting and/or Analyzing Data

The following individuals have been consulted on statistical aspects of the
design, development of the survey website, and/or will analyze the obtained
data.
Website Development
David Kanney, Contractor, NHGRI

301-435-6076

Survey Design and Analysis
Barbara Biesecker, PhD, Associate Investigator, NHGRI 301-496-3979
Rebecca Ferrer, PhD, Health Scientist, NCI

240-276-6824

Annette Kaufman, PhD, Health Scientist, NCI

240-276-6824

William Klein, PhD, Associate Director,
Behavioral Research, NCI

240-276-6824

Laura Koehly, PhD, Senior Investigator, NHGRI

301-451-3999

Christopher Marcum, PhD, Staff Scientist, NHGRI

301-594-6240

Colleen McBride, PhD, Senior Investigator, NHGRI

301-594-6788

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Heather Patrick, PhD, Health Scientist, NCI

240-276-6824

Susan Persky, PhD , Associate Investigator, NHGRI

301-443-0098

Philip Shaw, PhD, Investigator, NHGRI

301-451-4010

Jennifer Tabor, PhD, CRTA Fellow, NCI

240-276-6824

Data Management and Analysis
The Social and Behavioral Research Branch (SBRB), NHGRI, has a
longstanding contract (9 years) with Abt Associates to serve as the branch’s
“statistical core”. This core provides an array of statistical support services
conducted by a cadre of skilled (mostly master’s trained) statisticians. The
statisticians who are assigned to data analysis tasks vary depending on the
analyses to be conducted. As a paid service provider, the statisticians are
not co-authors on manuscripts or co-investigators. Instead, these
statisticians follow the direction of study investigators in conducting
univariate, bivariate, and multivariate analyses of data provided to them by
SBRB investigators. The SBRB investigators (named in this request) are
responsible for directing and interpreting the analyses. Abt services
(including data file creation) and analysis is described and reviewed in our
Human Subjects Research proposals and subject to the requirements of
confidentiality (e.g., secure data transfer, and protections of confidential

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data). The project director is Dr. Chanza Baytop who is a Senior Associate|
Abt Associates (O: 301-634-1727 | M: 443-506-8984 | F: 301-828-9756 |
www.abtassociates.com). Dr. Baytop will not serve as a co-investigator or
data analyst but oversees the assignment of statisticians to projects. All of
the 7 projects in this protocol will be eligible to receive services provided by
the Abt statistical core.

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