[Federal Register Volume 78, Number 80 (Thursday, April 25, 2013)]
[Notices]
[Pages 24427-24428]
From the Federal Register Online via the Government Publishing Office [www.gpo.gov]
[FR Doc No: 2013-09824]
[[Page 24427]]
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DEPARTMENT OF HEALTH AND HUMAN SERVICES
National Institutes of Health
Proposed Collection; 60-Day Comment Request; Genomics and Society
Public Surveys in Conjunction With Smithsonian Museum of Natural
History Genome Exhibit
SUMMARY: In compliance with the requirement of Section 3506(c)(2)(A) of
the Paperwork Reduction Act of 1995, for opportunity for public comment
on proposed data collection projects, the National Human Genome
Research Institute (NHGRI), National Institutes of Health (NIH), will
publish periodic summaries of proposed projects to be submitted to the
Office of Management and Budget (OMB) for review and approval.
Written comments and/or suggestions from the public and affected
agencies are invited on any of the following points: (1) Whether the
proposed collection of information is necessary for the proper
performance of the function of the agency, including whether the
information will have practical utility; (2) The accuracy of the
agency's estimate of the burden of the proposed collection of
information, including the validity of the methodology and assumptions
used; (3) Ways to enhance the quality, utility, and clarity of the
information to be collected; and (4) Ways to minimize the burden of the
collection of information on those who are to respond, including the
use of appropriate automated, electronic, mechanical, or other
technological collection techniques or other forms of information
technology.
To Submit Comments and for Further Information Contact: To obtain a
copy of the data collection plans and instruments, submit comments in
writing, or request more information on the proposed project, contact:
Laura M. Koehly, Ph.D., Senior Investigator, Social and Behavioral
Research Branch, NHGRI, NIH, 31 Center Drive MSC 2073, Building 31,
Room B1B54, Bethesda, MD 20892, or call non-toll-free number (301) 451-
3999, or Email your request, including your address to:
[email protected]. Formal requests for additional plans and
instruments must be requested in writing.
DATES: Comment Due Date: Comments regarding this information collection
are best assured of having their full effect if received within 60 days
of the date of this publication.
Proposed Collection: Genomics and Society Public Surveys in
Conjunction with National Museum of Natural History Genome Exhibit,
0925-NEW, National Human Genome Research Institute (NHGRI), National
Institutes of Health (NIH).
Need and Use of Information Collection: The National Human Genome
Research Institute's (NHGRI) 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 upcoming exhibit at the Smithsonian
National Museum of Natural History, ``Genome: Unlocking Life's Code'',
provides a unique opportunity to obtain the perspectives of the public
about the role of genomics in society. Surveys included in this project
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;
Implications of genetics knowledge in understanding race
and ancestry;
Opinions regarding genetics knowledge necessary for making
legal, health, and lifestyle decisions.
The exhibit is scheduled to open in June, 2013, and will reside at
the National Museum of Natural History for one year after which it will
travel across the country. Data collection for this project is
anticipated to begin fall, 2013 and continue through the course of the
exhibit. 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.
Adults (18+ years) will be recruited through the exhibit using two
different approaches. First, interactive displays within the exhibit
will offer visitors the opportunity to text responses to questions
related to genomics and genomic information. Respondents will be sent
an automatic invitation to complete online surveys and a link to the
Web site 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.
Second, participants will also be recruited via a link to the surveys
on the National Museum of Natural History's Web site. The URL for this
survey site may also be advertised separately through media and social
media channels.
The surveys will be available on a designated survey Web site
hosted by the NHGRI. Visitors to the survey Web site can fill out the
surveys if they choose. After completing an online consent confirming
eligibility and a short demographic module, participants will be
offered the option to complete one or more of the seven available
surveys. In 2012, 7.6 million people visited the National Museum of
Natural History. We estimate that our recruitment efforts will reach 1%
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.
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.
OMB approval is requested for 3 years. There are no costs to
respondents other than their time. The total estimated annualized
burden hours are 32,752.
Estimated Annualized Burden Hours
----------------------------------------------------------------------------------------------------------------
Number of Average time
Form name Number of responses per per response Total annual
respondents respondent (in hours) burden hours
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Text Responses.................................. 76,000 5 1/60 6,333
Consent and Demographics Screener............... 57,000 1 5/60 4,750
Health Communication and Networks Survey........ 10,000 1 30/60 5,000
Genomics and Health Beliefs Survey.............. 10,000 1 20/60 3,333
Genomics in Decision Making Survey.............. 10,000 1 15/60 2,500
[[Page 24428]]
Genomics of Weight Survey....................... 10,000 1 15/60 2,500
Genomics of Behavioral Dispositions Survey...... 10,000 1 12/60 2,000
Genomics and Self-Concept Survey................ 10,000 1 5/60 833
Race, Ancestry, Identity and Genomics Survey.... 10,000 1 15/60 2,500
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Dated: April 19, 2013.
Gloria Butler,
Project Clearance Liaison, NHGRI, National Institutes of Health.
[FR Doc. 2013-09824 Filed 4-24-13; 8:45 am]
BILLING CODE 4140-01-P