Request for Comments on Issues of Privacy and Access With Regard to Human Genome Sequence Data, 18247-18248 [2012-7329]

Download as PDF 18247 Federal Register / Vol. 77, No. 59 / Tuesday, March 27, 2012 / Notices of racial/ethnic health status and health care disparities in the general population.’’ Additionally, OMH can use the findings about progress made in raising awareness to identify collaborative partners in the federal government, at the state and local levels, among businesses and non-profits, and among the faith community, in order to reach a wider audience. Further, these results can be used by program decision-makers and policy-makers, within and outside of HHS, who are interested in capturing progress made over time as HHS disseminates information to the U.S. population that confirms the existence, and societal effects, of racial and ethnic health disparities. ESTIMATED ANNUALIZED BURDEN TABLE Number of respondents* Type of respondent Number of responses per respondent Average burden per response (in hours) Total burden hours General Population .......................................................................................... Physician .......................................................................................................... 3,159 340 1 1 14/60 14/60 737 79 Total .......................................................................................................... ........................ ........................ ........................ 816 * Based on actual completion rates from the 2010 OMH/NORC survey. Keith A. Tucker, Office of the Secretary, Paperwork Reduction Act Reports Clearance Officer. [FR Doc. 2012–7287 Filed 3–26–12; 8:45 am] 202–233–3960. Email: cary.scheiderer@bioethics.gov. Additional information may be obtained at https://www.bioethics.gov. BILLING CODE 4150–29–P SUPPLEMENTARY INFORMATION: DEPARTMENT OF HEALTH AND HUMAN SERVICES Request for Comments on Issues of Privacy and Access With Regard to Human Genome Sequence Data The Presidential Commission for the Study of Bioethical Issues, Office of the Secretary, Department of Health and Human Services. ACTION: Notice. AGENCY: The Presidential Commission for the Study of Bioethical Issues is requesting public comment on the ethical issues raised by the ready availability of large-scale human genome sequence data, with regard to privacy and data access and the balancing of individual and societal interests. DATES: To assure consideration, comments must be received by May 25, 2012. Comments received after this date will be considered only as time permits. ADDRESSES: Individuals, groups, and organizations interested in commenting on this topic may submit comments by email to info@bioethics.gov or by mail to the following address: Public Commentary, The Presidential Commission for the Study of Bioethical Issues, 1425 New York Ave. NW., Suite C–100, Washington, DC 20005. FOR FURTHER INFORMATION CONTACT: Cary Scheiderer, Senior Policy and Research Analyst, The Presidential Commission for the Study of Bioethical Issues, 1425 New York Avenue NW., Suite C–100, Washington, DC 20005. Telephone: mstockstill on DSK4VPTVN1PROD with NOTICES SUMMARY: VerDate Mar<15>2010 17:14 Mar 26, 2012 Jkt 226001 On November 24, 2009, the President established The Presidential Commission for the Study of Bioethical Issues (Commission) to advise him on bioethical issues generated by novel and emerging research in biomedicine and related areas of science and technology. The Commission is charged to identify and promote policies and practices that assure ethically responsible conduct of scientific research and healthcare delivery. Undertaking these duties, the Commission seeks to identify and examine specific bioethical, legal, and social issues related to potential scientific and technological advances; examine diverse perspectives and possibilities for international collaboration on these issues; and recommend legal, regulatory, or policy actions as appropriate. The Commission is examining issues of privacy and access as pertains to large-scale human genome sequence data, including whole exome and whole genome data. As a result of the tremendous technological advances that have dramatically reduced the cost of sequencing, the science is at a point where relatively inexpensive, rapid sequencing of whole human genomes appears not only likely, but imminent. This prospect raises many questions for the scientific, medical, ethics, and patient communities related to how this information can and ought be collected, used, and governed. At the February 2012 meeting, the Commission decided to focus specifically on those questions related to privacy and data access and the balancing of individual and societal interests. PO 00000 Frm 00046 Fmt 4703 Sfmt 4703 The Commission will spend the next six months soliciting additional input from the scientific, ethics, and patient communities, as well as others, to help inform our deliberations of these important topics. The Commission will provide the President with a report of its findings and recommendations later this year. The Commission is particularly interested in policies, practices, research, and perspectives on issues of privacy and data access as they relate to the integration of large-scale human genome sequencing into research and clinical care. To this end, the Commission is inviting interested parties to provide input and advice through written comments. Among other issues, the Commission is interested in receiving comments on the implications of large-scale human genome sequencing for the privacy of individuals, research subjects, patients and their families; the views of those groups and medical professional communities about privacy, both as regards genomic information and evolving notions of privacy, as evidenced and influenced by social media; and models and mechanisms for protecting privacy, in both genetic/ genomic databases and biobanks, but also in large databases of sensitive information. The Commission is further interested in receiving comments on issues related to balancing individual and societal interests with regard to the sharing of and access to large-scale human genomic data; the views of patients and other stakeholders on who should have access to these data and who should control access; models and mechanisms for governing access to genomic information; the role of health information technology in providing and governing access to genomic data; and access to genetic/genomic E:\FR\FM\27MRN1.SGM 27MRN1 18248 Federal Register / Vol. 77, No. 59 / Tuesday, March 27, 2012 / Notices information by law enforcement entities. Please address comments by email to info@bioethics.gov, or by mail to the following address: Public Commentary, The Presidential Commission for the Study of Bioethical Issues, 1425 New York Avenue NW., Suite C–100, Washington, DC 20005. Comments will be publicly available, including any personally identifiable or confidential business information that they contain. Trade secrets should not be submitted. Dated: March 21, 2012. Wanda K. Jones, Principal Deputy Secretary for Health, Department of Health and Human Services. [FR Doc. 2012–7329 Filed 3–26–12; 8:45 am] BILLING CODE 4154–06–P DEPARTMENT OF HEALTH AND HUMAN SERVICES Meeting of the Advisory Committee on Minority Health Office of Minority Health, Office of the Assistant Secretary for Health, Office of the Secretary, Department of Health and Human Services. ACTION: Notice of meeting. AGENCY: As stipulated by the Federal Advisory Committee Act, the Department of Health and Human Services (DHHS) is hereby giving notice that the Advisory Committee on Minority Health (ACMH) will hold a meeting. The meeting is open to the public. Preregistration is required for both public attendance and comment. Any individual who wishes to attend the meeting and/or participate in the public comment session should email acmh@osophs.dhhs.gov. DATES: The meeting will be held on Thursday, April 26, 2012 from 9 a.m. to 5 p.m. and Friday, April 27, 2012 from 9 a.m. to 1 p.m. ADDRESSES: The meeting will be held at the Doubletree Hotel, 8120 Wisconsin Avenue, Bethesda, Maryland 20814. FOR FURTHER INFORMATION CONTACT: Ms. Monica A. Baltimore, Tower Building, 1101 Wootton Parkway, Suite 600, Rockville, Maryland 20852. Phone: 240– 453–2882 Fax: 240–453–2883. SUPPLEMENTARY INFORMATION: In accordance with Public Law 105–392, the ACMH was established to provide advice to the Deputy Assistant Secretary for Minority Health in improving the health of each racial and ethnic minority group and on the development of goals and specific program activities of the Office of Minority Health. mstockstill on DSK4VPTVN1PROD with NOTICES SUMMARY: VerDate Mar<15>2010 17:14 Mar 26, 2012 Jkt 226001 Topics to be discussed during this meeting will include strategies to improve the health of racial and ethnic minority populations through the development of health policies and programs that will help eliminate health disparities, as well as other related issues. Public attendance at the meeting is limited to space available. Individuals who plan to attend and need special assistance, such as sign language interpretation or other reasonable accommodations, should notify the designated contact person at least fourteen (14) business days prior to the meeting. Members of the public will have an opportunity to provide comments at the meeting. Public comments will be limited to three minutes per speaker. Individuals who would like to submit written statements should mail or fax their comments to the Office of Minority Health at least seven (7) business days prior to the meeting. Any members of the public who wish to have printed material distributed to ACMH committee members should submit their materials to the Executive Director, ACMH, Tower Building, 1101 Wootton Parkway, Suite 600, Rockville, Maryland 20852, prior to close of business April 19, 2012. Dated: March 13, 2012. Monica A. Baltimore, Executive Director, Advisory Committee on Minority Health, Office of Minority Health, Office of the Assistant Secretary for Health, Office of the Secretary, U.S. Department of Health and Human Services. [FR Doc. 2012–7330 Filed 3–26–12; 8:45 am] BILLING CODE 4150–29–P DEPARTMENT OF HEALTH AND HUMAN SERVICES Decision To Evaluate a Petition To Designate a Class of Employees From the Winchester Engineering and Analytical Center in Winchester, MA, To Be Included in the Special Exposure Cohort National Institute for Occupational Safety and Health (NIOSH), Centers for Disease Control and Prevention, Department of Health and Human Services. ACTION: Notice. AGENCY: NIOSH gives notice as required by 42 CFR 83.12(e) of a decision to evaluate a petition to designate a class of employees from the Winchester Engineering and Analytical Center in Winchester, Massachusetts, to be included in the Special Exposure Cohort under the Energy Employees SUMMARY: PO 00000 Frm 00047 Fmt 4703 Sfmt 4703 Occupational Illness Compensation Program Act of 2000. The initial proposed definition for the class being evaluated, subject to revision as warranted by the evaluation, is as follows: Facility: Winchester Engineering and Analytical Center. Location: Winchester, Massachusetts. Job Titles and/or Job Duties: All employees of the Department of Energy, its predecessor agencies, and its contractors and subcontractors. Period of Employment: October 1, 1952 to December 31, 1961. FOR FURTHER INFORMATION CONTACT: Stuart L. Hinnefeld, Director, Division of Compensation Analysis and Support, National Institute for Occupational Safety and Health, 4676 Columbia Parkway, MS C–46, Cincinnati, OH 45226, Telephone 877–222–7570. Information requests can also be submitted by email to DCAS@CDC.GOV. John Howard, Director, National Institute for Occupational Safety and Health. [FR Doc. 2012–7292 Filed 3–26–12; 8:45 am] BILLING CODE 4163–19–P DEPARTMENT OF HEALTH AND HUMAN SERVICES [30-Day–12–12BK] Agency for Toxic Substances and Disease Registry; Agency Forms Undergoing Paperwork Reduction Act Review The Centers for Disease Control and Prevention (CDC) publishes a list of information collection requests under review by the Office of Management and Budget (OMB) in compliance with the Paperwork Reduction Act (44 U.S.C. chapter 35). To request a copy of these requests, call (404) 639–7570 or send an email to omb@cdc.gov. Send written comments to CDC Desk Officer, Office of Management and Budget, Washington, DC or by fax to (202) 395–5806. Written comments should be received within 30 days of this notice. Proposed Project Prospective Birth Cohort Study Involving Environmental Uranium Exposure in the Navajo Nation—New— Agency for Toxic Substances and Disease Registry (ATSDR) and Centers for Disease Control and Prevention (CDC). Background and Brief Description The Navajo Nation includes 16 million acres of New Mexico, Utah and Arizona. It is the largest Alaska Native/ E:\FR\FM\27MRN1.SGM 27MRN1

Agencies

[Federal Register Volume 77, Number 59 (Tuesday, March 27, 2012)]
[Notices]
[Pages 18247-18248]
From the Federal Register Online via the Government Printing Office [www.gpo.gov]
[FR Doc No: 2012-7329]


-----------------------------------------------------------------------

DEPARTMENT OF HEALTH AND HUMAN SERVICES


Request for Comments on Issues of Privacy and Access With Regard 
to Human Genome Sequence Data

AGENCY: The Presidential Commission for the Study of Bioethical Issues, 
Office of the Secretary, Department of Health and Human Services.

ACTION: Notice.

-----------------------------------------------------------------------

SUMMARY: The Presidential Commission for the Study of Bioethical Issues 
is requesting public comment on the ethical issues raised by the ready 
availability of large-scale human genome sequence data, with regard to 
privacy and data access and the balancing of individual and societal 
interests.

DATES: To assure consideration, comments must be received by May 25, 
2012. Comments received after this date will be considered only as time 
permits.

ADDRESSES: Individuals, groups, and organizations interested in 
commenting on this topic may submit comments by email to 
info@bioethics.gov or by mail to the following address: Public 
Commentary, The Presidential Commission for the Study of Bioethical 
Issues, 1425 New York Ave. NW., Suite C-100, Washington, DC 20005.

FOR FURTHER INFORMATION CONTACT: Cary Scheiderer, Senior Policy and 
Research Analyst, The Presidential Commission for the Study of 
Bioethical Issues, 1425 New York Avenue NW., Suite C-100, Washington, 
DC 20005. Telephone: 202-233-3960. Email: 
cary.scheiderer@bioethics.gov. Additional information may be obtained 
at https://www.bioethics.gov.

SUPPLEMENTARY INFORMATION: On November 24, 2009, the President 
established The Presidential Commission for the Study of Bioethical 
Issues (Commission) to advise him on bioethical issues generated by 
novel and emerging research in biomedicine and related areas of science 
and technology. The Commission is charged to identify and promote 
policies and practices that assure ethically responsible conduct of 
scientific research and healthcare delivery. Undertaking these duties, 
the Commission seeks to identify and examine specific bioethical, 
legal, and social issues related to potential scientific and 
technological advances; examine diverse perspectives and possibilities 
for international collaboration on these issues; and recommend legal, 
regulatory, or policy actions as appropriate.
    The Commission is examining issues of privacy and access as 
pertains to large-scale human genome sequence data, including whole 
exome and whole genome data. As a result of the tremendous 
technological advances that have dramatically reduced the cost of 
sequencing, the science is at a point where relatively inexpensive, 
rapid sequencing of whole human genomes appears not only likely, but 
imminent. This prospect raises many questions for the scientific, 
medical, ethics, and patient communities related to how this 
information can and ought be collected, used, and governed. At the 
February 2012 meeting, the Commission decided to focus specifically on 
those questions related to privacy and data access and the balancing of 
individual and societal interests.
    The Commission will spend the next six months soliciting additional 
input from the scientific, ethics, and patient communities, as well as 
others, to help inform our deliberations of these important topics. The 
Commission will provide the President with a report of its findings and 
recommendations later this year.
    The Commission is particularly interested in policies, practices, 
research, and perspectives on issues of privacy and data access as they 
relate to the integration of large-scale human genome sequencing into 
research and clinical care. To this end, the Commission is inviting 
interested parties to provide input and advice through written 
comments.
    Among other issues, the Commission is interested in receiving 
comments on the implications of large-scale human genome sequencing for 
the privacy of individuals, research subjects, patients and their 
families; the views of those groups and medical professional 
communities about privacy, both as regards genomic information and 
evolving notions of privacy, as evidenced and influenced by social 
media; and models and mechanisms for protecting privacy, in both 
genetic/genomic databases and biobanks, but also in large databases of 
sensitive information. The Commission is further interested in 
receiving comments on issues related to balancing individual and 
societal interests with regard to the sharing of and access to large-
scale human genomic data; the views of patients and other stakeholders 
on who should have access to these data and who should control access; 
models and mechanisms for governing access to genomic information; the 
role of health information technology in providing and governing access 
to genomic data; and access to genetic/genomic

[[Page 18248]]

information by law enforcement entities.
    Please address comments by email to info@bioethics.gov, or by mail 
to the following address: Public Commentary, The Presidential 
Commission for the Study of Bioethical Issues, 1425 New York Avenue 
NW., Suite C-100, Washington, DC 20005. Comments will be publicly 
available, including any personally identifiable or confidential 
business information that they contain. Trade secrets should not be 
submitted.

    Dated: March 21, 2012.
Wanda K. Jones,
Principal Deputy Secretary for Health, Department of Health and Human 
Services.
[FR Doc. 2012-7329 Filed 3-26-12; 8:45 am]
BILLING CODE 4154-06-P
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