StatementA_Genomics and Society Public Surveys

Supporting Statement A
for
Genomics and Society Public Surveys

August 8, 2013

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
Section

Page

A.
JUSTIFICATION…………………………………………………………………1
A.1

CIRCUMSTANCES MAKING THE COLLECTION OF INFORMATION NECESSARY ......1

A.2. PURPOSE AND USE OF THE INFORMATION COLLECTION .................................2
A.3

USE OF INFORMATION TECHNOLOGY AND BURDEN REDUCTION ........................9

A.4

EFFORTS TO IDENTIFY DUPLICATION AND USE OF SIMILAR INFORMATION .......11

A.5

IMPACT ON SMALL BUSINESSES OR OTHER SMALL ENTITIES ............................15

A.6

CONSEQUENCES OF COLLECTING THE INFORMATION LESS FREQUENTLY .........15

A.7

SPECIAL CIRCUMSTANCES RELATING TO THE GUIDELINES OF 5 CFR 1320.5 ...15

A.8

COMMENTS IN RESPONSE TO THE FEDERAL REGISTER NOTICE AND EFFORTS TO
CONSULT OUTSIDE AGENCY .............................................................................15

A.9

EXPLANATION OF ANY PAYMENT OF GIFT TO RESPONDENTS ...........................16

A.10 ASSURANCE OF CONFIDENTIALITY PROVIDED TO RESPONDENTS .....................16
A.11 JUSTIFICATION FOR SENSITIVE QUESTIONS .......................................................17
A.12 ESTIMATES OF HOUR BURDEN INCLUDING ANNUALIZED HOURLY COSTS........17
A.13 ESTIMATE OF OTHER TOTAL ANNUAL COST BURDEN TO RESPONDENTS OR
RECORD
KEEPERS ...........................................................................................................20

A.14 ANNUALIZED COST TO THE FEDERAL GOVERNMENT ........................................20
A.15 EXPLANATION FOR PROGRAM CHANGES OR ADJUSTMENTS .............................21
A.16 PLANS FOR TABULATION AND PUBLICATION AND PROJECT TIME SCHEDULE ...21
A.17 REASON(S) DISPLAY OF OMB EXPIRATION DATE IS INAPPROPRIATE ...............25
A.18 EXCEPTIONS TO CERTIFICATION FOR PAPERWORK REDUCTION ACT
SUBMISSIONS ........................................................................................................

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List of Attachments
(Appearance in Supporting Statement A)

Attachment 1. Flow Chart of Survey Procedure
Attachment 2. Interactive Exhibit Display Prompts
Attachment 3. Screenshot of Survey Website Word Clouds
Attachment 4. Consent for Online Surveys
Attachment 5. Demographics Questions
Attachment 6. Survey: Map Your Social Network
Attachment 7: Screenshot: Map Your Social Network
Attachment 8. Survey: Health and Genetics from YOUR Point of View
Attachment 9: Screenshot: Health and Genetics from YOUR Point of View
Attachment 10. Survey: Could Your Genes Predict Your Weight?
Attachment 11: Screenshot: Could Your Genes Predict Your Weight?
Attachment 12. Survey: Kids, Genes, and Health
Attachment 13: Screenshot: Kids, Genes, and Health
Attachment 14. Survey: Celebrities, Prescription Drugs & Salmon
Attachment 15: Screenshot: Celebrities, Prescription Drugs & Salmon
Attachment 16. Survey: Will Genome Information Change How You View
Yourself?
Attachment 17: Screenshot: Will Genome Information Change How You View
Yourself?
Attachment 18. Survey: Exploring Our Identity: Genetics, Ancestry, and Race
Attachment 19: Screenshot: Exploring Our Identity: Genetics, Ancestry, and Race
Attachment 20. Poll Everywhere Privacy Policy
Attachment 21: Privacy Impact Assessment
Attachment 22. IRB Approval Letters

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A.

Justification

A.1

Circumstances Making the Collection of Information Necessary

This request is for Office of Management and Budget (OMB) approval for
the Genomics and Society Public Survey data collection scheduled to begin
in the fall of 2013 by the National Institutes of Health (NIH), through the
National Human Genome Research Institute (NHGRI), in partnership with
the Smithsonian Institute. This is a new request.
The National Human Genome Research Institute’s (NHGRI), National
Institutes of Health (NIH), strategic plan puts a strong focus on
understanding more fully the societal implications of recent genomic
advances. Currently, there is limited knowledge about the public’s view
regarding genomics and society. The Smithsonian National Museum of
Natural History exhibit, “Genome: Unlocking Life’s Code”, provides a
unique opportunity to obtain the perspective of the public about the
behavioral and social issues related to genomics. The collection of
information activities set forth herein would be conducted under the
authorities granted in the Public Health Service Act, Title 42 USC 285s.
Surveys within this Information Collection Request consider a broad range
of topics related to Genomics and Society, including the following content
areas:
 Beliefs about the role of genomics in health conditions and associated
risk factors;
 The role of friends, family, media, and health professionals in
gathering and communicating health risk information;
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 Implications of genetics knowledge in understanding self-identity,
race and ancestry;
 Opinions regarding genetics knowledge necessary for making legal,
health, and lifestyle decisions.

The exhibit opened in June, 2013, and will reside at the National
Museum of Natural History for fourteen months after which it will travel
across the country. Data collection for this project is anticipated to begin
fall of 2013 and continue through the course of the exhibit, including the
time in which it will travel to other cities across the country. The planned
sample size is approximately 171,000 participants completing at least one of
seven available surveys.
This project will help to fulfill the mission of the Institute;
specifically, to obtain knowledge about the public’s views regarding
genomics and society. This information will inform future NHGRI DIR
research and community education programs that promote genomic
awareness and disease prevention.

A.2 Purpose and Use of the Information 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.

2

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. 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, respondents will be sent an
automatic invitation to complete online surveys and a link to the website
containing these surveys. Text message content will be collected by a third
party short code texting service that will remove personal identifying
information from the text message responses. Text message responses will
be displayed on the survey website in word clouds (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. In 2012, 7.6
million people visited the National Museum of Natural History. We
estimate that our recruitment efforts will reach 3% of these visitors, 75% of
whom will choose to complete one or more of the surveys. If these
anticipated recruitment numbers are not met, a market research survey
company may be used to recruit participants.

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The surveys will be available on a designated survey website hosted
by the NHGRI (https://research.nhgri.nih.gov/SocialGenome). Visitors to
the survey website can choose to complete one or more of the seven
available surveys. After selecting an initial survey to complete, participants
will complete an online consent confirming eligibility (see Attachment 4), a
short demographic module (see Attachment 5), and the selected survey.
Once they complete an initial survey, participants will be offered the option
to complete another survey. If they choose to complete more surveys in the
same session, they will not be asked to repeat the demographic survey
module or consent form. Burden estimates for each survey include
completion of the demographic modules and thus, overestimate time to
complete when the demographic module is not included. Each survey has
separate research aims that address questions important in our understanding
of how genomics interfaces with society. These specific aims are detailed
below:
Survey: Map Your Social Network
Previous research suggests that families are a social context for which social
network-based interventions may be particularly effective in 1) motivating
the dissemination of health risk information and 2) engaging families in
encouragement and support strategies aimed to facilitate positive adaptation
to disease risk (Koehly & Loscalzo, 2009). However, not much is known
about other social spheres in which health information is exchanged that
may be leveraged in network-based interventions. A large scale collection
of social network information from participants from diverse backgrounds
will allow for a better understanding of network characteristics associated

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with health communication and will be used to identify network typologies
that may guide targeted health communication intervention programs. To
our knowledge, no such large scale collection of social networks currently
exists. The survey items are detailed in Attachment 6; a website screenshot
which includes the burden statement, consent, demographic module and
survey is provided in Attachment 7.

Survey: Health and Genetics from YOUR Point of View
This survey (see Attachment 8) aims to understand the extent to which
people view human characteristics as fixed or malleable, and how such
beliefs are related to their perceptions of how risk factors influence their
own vs. others' health risks. This research will also capture both cognitive
and affective measures of common disease risk perceptions. Ultimately, this
research aims to evaluate how risk perception is associated with personality,
with the hope of determining whether those relationships shed light on
concomitant individual differences in beliefs about the relative impact of
risk factors on disease. Attachment 9 contains screenshots of the online
survey, including the burden statement, consent, and demographic module.

Survey: Could Your Genes Predict Your Weight?
Genomic risk feedback approaches and personalized prevention strategies
with respect to overweight and obesity may, in the future, be successfully
developed for widespread use. Some lines of thought and research
presuppose that individuals would want to receive such genomic information
from their physician and use it in clinically-based lifestyle counseling.
However, at present, many patients are resistant to discussing weight with

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their physician. The current work assesses whether introducing genomic
information about weight and weight management either in its current state
of readiness/availability or in its potential future state, will change
individuals' attitudes and beliefs about including physicians in weight gain
prevention and/or weight management efforts. It also assesses preferences
and potential change in preferences for weight management information
seeking more broadly. Indeed, if individuals do not want to receive weightrelated genomic information from physicians, it will be useful to identify
their preferred sources. Attachment 10 contains the items on this survey;
Attachment 11 provides screenshots of the survey, including burden
statement, consent, and the demographic module.

Survey: Kids, Genes, and Health
It is unknown whether viewing childhood behavioral problems as reflecting
either genetic or environmental factors is linked to adult decisions about
whether to seek help for such problems from health care professionals. A
focus on parental understanding of childhood behavioral disorders is timely
given that the tool used to define psychiatric disorders, the Diagnostic and
Statistical Manual of Mental Disorders, is undergoing a major revision. This
revision was partly driven by epidemiological studies suggesting that
childhood behavioral disorders are not categorical, but rather represent the
extremes of distributions of behavioral traits that span the childhood
population, and will incorporate this concept of dimensionality of behaviors
in the diagnostic criteria. A key question is whether parents might exhibit
different treatment behaviors when the same behavioral problems are
explained or presented to them as a ‘disorder’ (the traditional categorical

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model) or as representing the extremes of a behavioral distribution. We thus
aim to 1) test for associations between adult’s attributions of childhood
behavioral problems and the tendency to seek help for the child and its exact
form and 2) determine if the presentation of the same behavioral problem in
dimensional rather than categorical terms is associated with different
treatment seeking proclivities. We will randomize respondents to one of
two surveys that vary scenarios presented to respondents. The surveys are
provided in Attachment 12, and screenshots with the burden statement,
demographic module, and surveys in Attachment 13.

Survey: Celebrities, Prescription Drugs & Salmon
Consumers are now encountering a number of new applications of genomics
in their daily life. Currently, there are numerous examples of mass media
advertisements of new products that make claims about how emerging
genetic science has been used to improve the product (e.g., cosmetics, health
enhancements and food products (i.e. salmon)). Additionally, genomic
discovery increasingly is being integrated into forensic science and used as
evidence in criminal investigations. Thus, individuals may be called upon to
consider such information in public service roles (e.g. jury duty).
Considerable concern has been raised that the public does not have adequate
levels of genetic literacy, that is, the ability to accurately understand and use
genetic information to make informed decisions about these products and
activities. However, it also is unclear what consumers would need to
understand to be well-informed. The aim of this survey (see Attachment 14)
is to have participants consider scenarios in which they might encounter
genomic-based products and in turn which facts would be most useful to

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know in these scenarios. The scenarios will be presented in random order to
participants. Key to this endeavor is to reach a broad and demographically
heterogeneous sample of consumers. Attachment 15 contains the
screenshots for this survey, including the burden statement and demographic
module.

Survey: Will Genome Sequence Information Change How You View
Yourself?

The promise of genome sequencing to enhance understanding of the genetic
origin of disease and disease risk, and improve treatments suggests it will
have a substantial positive effect on people’s health. However, if the
information is viewed as indicating something fundamentally negative about
who we are, such perceptions may impede uptake of health treatment and
prevention behaviors. Understanding whether learning results from genome
sequencing may have an impact on self-concept will facilitate design of
downstream studies of interventions aimed at mitigating more negative selfviews. In this survey (see Attachment 16), we aim to explore the impact of
(hypothetical) results from genome sequencing on individuals’ self-concept.
More specifically, if one were to receive a result from genome sequencing
that predicted a future disease risk, would one alter his/her self-concept to
that of a less healthy or more vulnerable person? Similarly, if one were to
receive a result from genome sequencing that indicated new information
about one’s ancestry, would one alter his/her self-concept? Our interest in
simultaneously studying the effect on self-concept of learning new
information about one’s ancestry provides a contrast to genomic health
information to assess whether any threat to self-concept is uniquely health
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related. Respondents will be randomized to one of the two proposed
scenarios (genome sequencing results or ancestry results). Our survey also
includes validated scales on contingencies of self-worth and clarity of selfconcept to assist in interpreting the data on genome sequencing and selfconcept. Attachment 17 includes screenshots of the burden statement for
this survey, the demographic module and the survey items.

Survey: Exploring Our Identity: Genetics, Ancestry, and Race
In recognition of the emerging genomic research related to assessing the
complex relationships among self-identified race, ancestral origin and
genetic components of diseases, it is important to study the public’s opinions
of race, ancestry and identity. The aim of this study is to investigate how the
public understands genomics, race, identity, and ancestry and how these
concepts interact with disease risk. Attachment 18 details the items on this
survey; Attachment 19 includes the screenshots for this survey.
A.3

Use of Information Technology and Burden Reduction

Participants will primarily be recruited within the exhibit. Specifically,
displays within the exhibit will offer visitors the opportunity to text
responses to questions related to genomics, genomic information and the
intersection of genomics with society. Respondents will be sent an
automatic invitation to complete online surveys and a link to the website
containing these surveys. Text message content will be collected by a third
party short code texting service, which will remove personal identifying
information from the text message responses. The texting service’s Privacy
Policy is detailed in Attachment 20, and has been approved by the NHGRI

9

IT Privacy Liaison. This recruitment approach reduces the burden to the
NHGRI research staff.

The surveys will be available on a designated survey website hosted by the
NHGRI Division of Intramural Research (DIR) Bioinformatics Core on
research.nhgri.nih.gov (URL: research.nhgri.nih.gov/SocialGenome) and
stored on a secure NHGRI server. Both the survey website and the database
storage system have received Certification within NCAT. The Privacy
Impact Assessment (PIA) for the Genomics and Society Surveys was
submitted to the NIH Senior Official for Privacy (See Attachment 21)

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.

Upon visiting the website, participants will be given background information
on the research, including the expected time burden for survey completion,
and will have a list of surveys from which to choose. They are not required
to complete any surveys, and may choose to complete one or more surveys.
After selecting a survey, they will read a consent form, confirm that they are
18 years or older, and select “accept” if they consent and would like to
continue. Next they will fill out a demographic module and 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
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completes another survey in the same session, he/she will not need to fill out
the demographic form or consent form again in order to eliminate
unnecessary burden. Responses will be chained within a given survey
session. However, if the participant chooses to come back to the website to
complete further surveys at another time, they will have to re-consent and
complete the demographic survey module again, since no identifying
information will be stored from participants.

Participants will be informed that their participation is completely voluntary,
that they will be able to stop their participation in this project at any point
during the study or skip any questions that they feel uncomfortable
answering. Additionally, participants will be informed that no personally
identifiable information (PII) will be stored and all responses will be
protected and secured to the extent permitted by law. This project has been
approved, following exempt review, by the NIH Office of Human Subjects
Research and the Smithsonian Institutes’ Institutional Review Board (see
Attachment 22).
A.4

Efforts to Identify Duplication and Use of Similar Information

Significant efforts have been made to minimize duplication of similar
information. There are few studies that have examined the intersection of
genomics and society, with no examples in the literature that have
considered the research aims proposed in this application. Below, a brief
summary of these efforts are detailed.

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Survey: Map Your Social Network
There is evidence that the structure of support exchange among family
members is associated with both emotional and behavioral adaptation to
genetic/genomic disease risk (Koehly et al., 2008; Ersig, Williams, Hadley,
& Koehly, 2009; Koehly & Hadley, 2008). However, not all relationships
within family systems are supportive in nature. Previous findings from the
hereditary cancer literature suggest that family conflict is a barrier to risk
dissemination (Koehly et al., 2003). Few studies have examined the role of
non-supportive relationships in family-level approaches to adaptation.
Additionally, there is limited knowledge as to the role that non-biological
network members may play in the dissemination of health information and
support processes. The current project will fill this gap in the literature by
evaluating how non-supportive relationships (e.g. conflict, control, and lack
of support) are associated with the adaptation process and the role of nonbiological network members in risk communication and adaptation.

Survey: Health and Genetics from YOUR Point of View
Most work on perceptions of malleability has focused on non-health
characteristics and outcomes, necessitating a closer look at beliefs in the
health domain. Moreover, very little work assesses risk perceptions related
to genetic risk in multiple ways, nor examines associations between those
measures and beliefs about risk factors. This is essential work in order to
best understand how people think about genetic risk vis-à-vis other risks.

Survey: Could Genes Predict Your Weight?

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There are no studies in the literature that address the research questions
posed in this survey. There is a small body of research that addresses patient
preferences for weight management counseling in collaboration with
primary care physicians. There is also a small literature assessing public
reactions to receipt of obesity-related genomic information. However, these
two areas have never before been brought together. This will be necessary to
prepare for integration of weight-related genomics information into clinical
care.

Survey: Kids, Genes, and Health
There is a dearth of empirical research on how adult’s attributions of a
child’s behavioral problems impact seeking help for the child. A wide
range of attributions for one of the most common disorders of childhoodAttention Deficit Hyperactivity Disorder– has been reported, ranging from
life events, to genetic factors and birth trauma (Bussing et al., 2006).
However, it is unknown whether these different attributions impact on
whether a parent decides to seek help for a child, and from whom.

Survey: Celebrities, Prescription Drugs & Salmon
Our research group has conducted several literature reviews over the last
five years regarding genetic literacy. The primary focus of this literature has
been to document that the public has poor understanding of the basic biology
of genetics. These findings then have been interpreted to suggest broad
based public education efforts. To date there has been no related research to
evaluate public education regarding genetics. This may be due in part to the
lack of understanding of what the public needs to know. Thus, the

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participants in this study are unlikely to have completed any surveys similar
to what is being proposed.

Survey: Will Genome Sequence Information Change How You View
Yourself?
The formative literature on self-concept appeared in the 1970’s. Since that
time the definition has been refined, scales have been developed and the
concept has been studied extensively in social psychology. In the mid1980’s, the dynamic nature of self-concept was proposed and studies have
subsequently focused on the phases and contextual circumstances associated
with multiple notions of oneself. Scholarship exists on self-concept and
academic success, leadership, and other life achievements. In the health
literature, it has been used as an outcome measure for intervention trials,
although studies on the affect of health risk on self-concept are lacking. In a
novel 2009 study, Esplen and colleagues assessed changes in self-concept
following receipt of a BRCA1/2 test result (Esplen et al., 2009). This study is
the sole example of exploring the effect of genetic test results on selfconcept. No studies have assessed the effects of genome sequencing
information on self-concept.

Survey: Exploring Our Identity: Genetics, Ancestry, and Race
A comparable study has not been conducted with the public. A literature
review has not identified a similar survey or study of this design.

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A.5

Impact on Small Businesses or Other Small Entities

No small businesses will be involved in this study.
A.6

Consequences of Collecting the Information Less Frequently

This is a single time research study, although the respondents can choose to
respond to multiple surveys provided on the study website.
Since no personal identifying information will be saved from study
participants, it is possible that a participant may choose to complete the same
survey multiple times.
A.7 Special Circumstances Relating to the Guidelines of 5 CFR 1320.5
The project fully complies with all guidelines of 5 CFR 1320.5.
A.8

Comments in Response to the Federal Register Notice and Efforts
to Consult Outside Agency

The proposed information collection was published in the Federal Register
on April 25, 2013, pages 24427-24428 and allowed 60-days for public
comment. No public comments were received.
Individuals from within the NHGRI, the broader NIH scientific community,
the Smithsonian Institute, and numerous outside companies were consulted
from October 2012 to the present, and these consultations are ongoing. The
individuals consulted include designers of the exhibit, experts in information
technology, and scientific experts in the content domains considered within
the surveys. During these consultations, all issues raised were satisfactorily
resolved. Development of the surveys and web-based survey infrastructure

15

for this request for information collection was conducted by scientific and
bioinformatics experts at the NIH, with the NHGRI leading the effort.
A.9

Explanation of Any Payment of Gift to Respondents

No payments are to be offered in regard to this information collection.
Participants completing the “Map your Social Network” survey will be able
to capture and print a copy of their personal social network. They may
choose to post this graphic to their personal social media website (i.e.
Facebook, Twitter, Pinterest). Once they leave the survey website, they will
not be able to recapture their data, since no personally identifiable
information, including names of network members and social media
identifying information, will be stored in the study database.
A.10 Assurance of Confidentiality Provided to Respondents
No personally identifiable information will be retained in the study database.
The cell phone numbers of participants who respond to the exhibit text
questions will be removed from their responses by a third party short code
texting company. Before completing any survey, participants will be
provided with an online consent form explaining the measures taken to
maintain their anonymity. Upon consent to complete a study survey,
responses will be assigned a random number; this random number will be
used to link responses completed by the participant within the same session.

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A.11

Justification for Sensitive Questions

No personally identifiable information is being retained in the study
database. Participants will provide online consent before completing the
study.

A.12 Estimates of Hour Burden Including Annualized Hourly Costs
Average hour burden for the Genomics and Society Surveys is presented in
Table 1. The annualized cost to respondents associated with the completion
of each survey is presented in Table 2. Burden estimates are based on the
informal pre-testing of each instrument with fewer than 9 individuals. The
estimate for hourly wage of respondents is based on the national median
hourly estimate for all occupations reported in the Bureau of Labor
Statistics’ Occupational Employment Statistics, May 2011 National
Occupational Employment and Wage Estimates United States.

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Table 1. Genomics and Society Surveys hour burden estimates
Survey Name

Number of
Respondents

Number of
Responses
Per
Respondent

Average
Burden
Hours Per
Response

Total
Annual
Burden
Hours
Requested

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

228,000
30,000

5
1

1/60
35/60

19,000
17,500

30,000

1

25/60

12,500

30,000

1

17/60

8,500

30,000

1

17/60

8,500

30,000

1

20/60

10,000

30,000

1

10/60

5,000

30,000

1

20/60

10,000

91,000

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Table 2. Genomics and Society Surveys annualized cost to respondents.
Survey Name

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

Number of
Respondents

Number of
Responses
Per
Respondent

228,000
30,000

5
1

1/60
35/60

$16.57
$16.57

$314,830
$289,975

30,000

1

25/60

$16.57

$207,125

30,000

1

17/60

$16.57

$140,845

30,000

1

17/60

$16.57

$140,845

30,000

1

20/60

$16.57

$165,700

30,000

1

10/60

$16.57

$82,850

30,000

1

20/60

$16.57

$165,700

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Average
Hourly
Burden
Wage Rate
Hours Per
Response

Respondent
Cost

$1,507,870

Totals

A.13 Estimate of Other Total Annual Cost Burden to Respondents or
Record Keepers
There are no capital costs associated with this collection.
A.14 Annualized Cost to the Federal Government
The estimated annualized cost to the Federal Government to support this
information collection is $196,600. This estimate is based on the mean
weighted salaries (average of $190,231, at 5% effort) of the 9 FTEs of
federal staff responsible for the scientific aspect of the proposed work, one
programmer developing and maintaining the survey website, as well the
equivalent of one full-time postdoctoral fellow involved in the dissemination
of research findings. It includes quantification of hours (full time) plus
estimates for operational expenses (including equipment, overhead, printing,
and support staff) that would not be incurred without this collection of
information. In addition, this cost estimate includes $15,000 per annum
allocated to the third party texting contract and the use of a market research
survey company to improve recruitment efforts if necessary. This cost
estimate considers conducting information collection activities, including the
design and development of the surveys, survey website, data collection,
editing, coding, tabulation, data analysis, and the reporting and
dissemination of results.

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A.15 Explanation for Program Changes or Adjustments
This is a new collection of information.
A.16 Plans for Tabulation and Publication and Project Time Schedule
The data to be collected are primarily for research purposes; thus, responses
will be summarized and published in scientific journals and made available
to the public through PubMed Central. Table 3 details the timeline for
project related activities. Data Analysis and Publication are projected to
begin 24 months after OMB approval. The specific analytical plans for each
survey are detailed below.

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Table 3. Estimated Project Time Schedule
Activity
Survey

Time Schedule
1 - 36 months after OMB
approval

Analyses

6 months after completion of
survey collection

Publication

6 months after completion of
analysis

Survey: Map Your Social Network
Two primary aims will be considered within this research. The first will
describe the networks in terms of composition, function and structure (CFS)
and identify network typologies characterized by varying CFS. Standard
network descriptive statistics, quadratic assignment and clustering
procedures and graphical approaches will be used to describe the CFS and
identify network typologies. The second will consider positive and negative
social pathways that underlie health risk communication and well-being.
Analyses considering relational outcomes, such as health communication,
will use graphical modeling techniques. Individual-level outcomes, such as
well-being, will be analyzed using linear and non-linear regression
techniques.

Survey: Health and Genetics from YOUR Point of View
The primary aim of this work is to evaluate the association between
cognitive and affective measures of perceived risk with measures of selfconcept and beliefs about the impact of risk factors on health. Specifically, a

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mediational model will be fitted using regression techniques testing whether
self-concept mediates the association between perceived risk and beliefs
about the relative impact of disease-relevant risk factors.

Survey: Could Your Genes Predict Your Weight?
Descriptive statistics will be used to identify where participants actively seek
information regarding factors that influence weight, who they talk to about
weight related concerns, including health care providers, and beliefs about
the causes of weight, including genes. Using repeated measures ANCOVA,
shifts in attitudes and beliefs about including their health care providers in
weight gain prevention and /or weight management efforts across three
different scenarios regarding the application of genetics and genomics for
weight management will be explored. Further, differences across these
scenarios in preferences for acquiring weight-related information more
broadly will be examined using generalized linear models.

Survey: Kids, Genes, and Health
This research has two primary hypotheses that will be explored. The first
investigates whether adults who hold a genetic attribution for childhood
behavioral problems will be more likely to view medical interventions as
appropriate. Correlational analyses will be performed to examine the
association between an aggregate measure of genetic attributions to
childhood behaviors and perceptions that medication and/or therapeutic
treatments are appropriate for the behavior, controlling for covariates such as
having a child affected by a behavioral disorder (e.g. ADHD or Autism).
The second investigates whether descriptions of behavioral problems in
dimensional rather than categorical terms will be associated with a decreased
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likelihood to view medical interventions as appropriate. Respondents will
be randomly assigned one of two different forms of the survey, one in which
descriptions of behavioral problems are in categorical terms and the other in
dimensional terms. Differences in opinions regarding medical interventions
across the two forms will be assessed using generalized linear modeling
approaches.

Survey: Celebrities, Prescription Drugs & Salmon
Items will be aggregated within scales and descriptive statistics computed to
describe participants genetic literacy, numeracy, importance of learning
genetics, and confidence with applying genetics in public service or
consumer roles. Correlational analyses will evaluate associations between
genetic literacy, numeracy and confidence. Using repeated measures
ANCOVA, differences in participants’ confidence in applying genetics
knowledge to problems detailed in five scenarios participants might
encounter in their daily lives will be assessed.

Survey: Will Genome Sequence Information Change How You View
Yourself?
Factor analytic approaches will be used to evaluate the construct validity for
items assessing contingencies of self-worth, self-concept, and clarity of selfconcept. Structural equation modeling will be used to examine the
relationships between self-worth, self-concept, and clarity of self-concept,
and whether those relationships differ across the two scenarios presented in
the surveys. Specifically, these two scenarios consider whether genome
sequencing reveals new information regarding disease risk or ancestry.

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Survey: Exploring Our Identity: Genetics, Ancestry, and Race
Descriptive statistics will be computed to assess the public’s views regarding
genetic ancestry testing, attitudes and beliefs about race and biological
definitions of race, and the use of ancestry information in health care
decision and other social contexts, such as law enforcement and college
admissions. Correlational analyses will examine associations between selfidentified race and ethnicity and attitudes and beliefs about the genetic basis
of race and the use of genetic ancestry in decision-making.

A.17 Reason(s) Display of OMB Expiration Date is Inappropriate
Not Applicable

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References
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Carvan, C. (2006). What "dr. mom" ordered: a community-based
exploratory study of parental self-care responses to children's ADHD
symptoms. Social Science & Medicine, 63, 871-82.
Ersig, A. L., Williams, J. K., Hadley, D. W., Koehly, L. M. (2009).
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with and without mutations for hereditary nonpolyposis colorectal
cancer: a pilot study. Genetics in Medicine, 11, 728-34.
Esplen, M. J., Stuckless, N., Hunter, J., Liede, A., Metcalfe, K. … Irwin, E.
(2009). The BRCA self-concept scale: a new instrument to measure
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Koehly, L.M., Peters J., Kuhn N., Hoskins, L., Letocha, A. … Greene, M. H.
(2008). Sisters in hereditary breast and ovarian cancer families:
communal coping, social integration, and psychological well-being.
Psycho-Oncology, 17, 812-821.
Koehly, L.M., Peterson, S.K., Watts, B. G., Kempf, K. K. G., Vernon, S.
W., Gritz, E. R. (2003) A social network analysis of communication
about hereditary nonpolyposis colorectal cancer genetic testing and
family functioning. Cancer Epidemiology Biomarkers & Prevention,
12, 304-313.

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