Request for Information: Voluntary Storage of Personal Data in Preparation for Emergencies, 29642-29643 [E6-7833]
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rmajette on PROD1PC67 with NOTICES
29642
Federal Register / Vol. 71, No. 99 / Tuesday, May 23, 2006 / Notices
report and recommendations on
pharmacogenomics, and a briefing on
FDA’s Critical Path Initiative. The
Committee will also hear from the
Centers for Medicare & Medicaid
Services on the status of a proposal to
add a genetics specialty to the
regulations implementing the Clinical
Laboratory Improvement Act
Amendments. In addition, the
Committee will discuss the status of its
solicitation of public comments on the
Committee’s draft report ‘‘Policy Issues
Associated with Undertaking a Large
U.S. Population Cohort Project on
Genes, Environment, and Disease’’
(posted at https://www4.od.nih.gov/oba/
sacghs/public_comments.htm).
Issues to be discussed on the second
day will include several presentations
intended to provide the Committee with
a better understanding of the impact of
gene patents and licensing practices on
access to genetic test and services as
well as deliberations about the
Committee’s next steps on this issue.
The Committee will also be updated
about the status of Federal genetic nondiscrimination legislation and the work
of the two interagency work groups
monitoring claims made by companies
advertising genetic tests on the Internet
and evaluating the public health impact
of DTC marketing of genetic tests.
Time will be provided each day for
public comments. The Committee
would welcome hearing from anyone
wishing to provide public comment on
any issue related to genetics, health and
society. Individuals who would like to
provide public comments should notify
the SACGHS Executive Secretary, Ms.
Sarah Carr, by telephone at 301–496–
9838 or E-mail at sc112c@nih.gov. The
SACGHS office is located at 6705
Rockledge Drive, Suite 750, Bethesda,
MD 20892. Anyone planning to attend
the meeting who is in need of special
assistance, such as sign language
interpretation or other reasonable
accommodations, is also asked to
contact the Executive Secretary.
Under authority of 42 U.S.C. 217a,
section 222 of the Public Health Service
Act, as amended, the Department of
Health and Human Services established
SACGHS to serve as a public forum for
deliberations on the broad range of
human health and societal issues raised
by the development and use of genetic
technologies and, as warranted, to
provide advice on these issues. The
draft meeting agenda and other
information about SACGHS, including
information about access to the webcast,
will be available at the following Web
site: https://www4.od.nih.gov/oba/
sacghs.htm.
VerDate Aug<31>2005
15:14 May 22, 2006
Jkt 208001
Dated: May 15, 2006.
Anna Snouffer,
Acting Director, NIH Office of Federal
Advisory Committee Policy.
[FR Doc. 06–4773 Filed 5–22–06; 8:45am]
BILLING CODE 4140–01–M
DEPARTMENT OF HEALTH AND
HUMAN SERVICES
Request for Information: Voluntary
Storage of Personal Data in
Preparation for Emergencies
Department of Health and
Human Services.
ACTION: Request for information.
AGENCY:
SUMMARY: To improve emergency
preparedness, response and recovery
efforts, HHS invites public comment on
the availability or feasibility of private
sector services through which
individuals could voluntarily submit
their personal information for storage so
that they, their family members, or other
designated individuals could access the
information in an emergency. HHS
invites all comments, suggestions,
recommendations, and creative ideas on
the establishment of voluntary
nationwide services that can best offer
this capability. This Request for
Information (RFI) is intended to provide
a synthesis of ideas for consideration,
and it is not intended to be part of any
procurement process.
DATES: Responses should be submitted
to the Department of Health and Human
Services on or before 5 p.m., EDT, July
24, 2006.
ADDRESSES: Electronic responses are
preferred and should be addressed to
Disaster_Storage_RFI@hhs.gov. Written
responses will also be accepted. Please
send to: Department of Health and
Human Services, Room 434E, 200
Independence Avenue, SW.,
Washington, DC 20201, Attention:
IMDA RFI Response.
A copy of this RFI is also available on
the World Wide Web at https://
www.hhs.gov/emergency/rfi/. Please
follow the instructions for submitting
responses.
Public Access: This RFI and all
responses will be made available to the
public in the HHS Public Reading
Room, 200 Independence Avenue, SW.,
Washington, DC. Please call 202–690–
7453 between 9 a.m. and 5 p.m. EDT to
arrange access to the Public Reading
Room. The RFI and all responses will
also be made available on the World
Wide Web at https://www.hhs.gov/
emergency/rfi/. Any information you
submit, including addresses, phone
numbers, e-mail addresses, and
PO 00000
Frm 00037
Fmt 4703
Sfmt 4703
personally identifiable information, will
be made public. Do not send
proprietary, commercial, financial,
business confidential, trade secret, or
personal information that should not be
made public.
FOR FURTHER INFORMATION CONTACT: Dr.
Helga Rippen, Secretary’s
Transformation Action Team for
Preparedness, 202–690–7100.
SUPPLEMENTARY INFORMATION:
Hurricanes Katrina and Rita were two of
the most devastating hurricanes ever
recorded, affecting approximately
90,000 square miles and 1.5 million
people. The hurricane and flooding
caused the evacuation of the city of New
Orleans, marking the first time a major
American city has been completely
evacuated. More than 700,000
households have received rental
assistance from the Federal Emergency
Management Agency, and more than 1.4
million families (over 4 million people)
received emergency financial assistance
from the American Red Cross. The
hurricane did not discriminate among
businesses, governments, and not-forprofit institutions: financial institutions,
healthcare facilities, local courthouses,
and academic institutions alike suffered
devastating destruction. In many cases,
significant personal and institutional
records were lost.
In response to the loss and
destruction of important documents
experienced by the survivors of these
hurricanes, the White House report, The
Federal Response to Hurricane Katrina:
Lessons Learned, recommended that the
Federal government work with the
private sector to encourage the
development of a capacity to voluntarily
store and retrieve personal information
that would be useful in the event of a
natural or manmade disaster, such as an
earthquake, flood, pandemic influenza,
or terrorist event. Specifically, the
report recommended that the Federal
government should:
encourage the private sector development of
a capability for individuals to voluntarily
submit their personal identifying information
for virtual storage that citizens and their
families could access during emergencies.
The capability is best thought of as a 21st
century version of a bank vault, with virtual
safe deposit boxes for information. Disaster
victims could access the virtually stored data
to apply for Federal assistance, medical
treatment, or insurance benefits. Because of
the sensitivity of the personal data stored,
strict privacy limitations and protections
would be required.
Appendix A, Recommendation 66, at
page 107. The White House report, The
Federal Response to Hurricane Katrina:
Lessons Learned, is available on the
E:\FR\FM\23MYN1.SGM
23MYN1
Federal Register / Vol. 71, No. 99 / Tuesday, May 23, 2006 / Notices
Web at https://www.whitehouse.gov/
infocus/hurricane/.
This Request for Information is a first
step in understanding the availability or
feasibility of such services and how the
Federal government might encourage
citizens to voluntarily maintain critical
information so that it can be accessed
easily during an emergency. This
Request for Information is not intended
as a prelude to any procurement by the
Federal government. Rather, it is
intended to elicit suggestions from
members of the public about capabilities
that should be considered for
maintaining personal information and to
provide ideas for consideration as to
how to encourage individuals and the
private sector to take action in
preparation for emergencies.
In particular, HHS seeks to
understand the roles and
responsibilities of individuals who
provide and maintain this information,
including the relationship between
custodians and individuals who use
their services. Respondents should
differentiate between capabilities that
already exist and those which are
planned or desirable in the future.
A separate Request for Information
will be published in the Federal
Register seeking input about the
availability or feasibility of electronic
benefits services for disaster victims that
would facilitate the provision of
Federal, state, local, and nongovernmental human assistance
programs in an efficient manner.
HHS encourages all potentially
interested parties—individuals,
consumer groups, associations,
governments, non-governmental
organizations, and commercial
entities—to respond. To facilitate
review of the responses, please
reference the question number in your
response.
Questions for Response
rmajette on PROD1PC67 with NOTICES
1. Approach, Finance, Sustainability,
and Roles
a. What models and options are
currently available that provide or
support the capability to provide ready
access to critical documents during or
following an emergency?
b. What models and options should be
available, that are currently not
available, to provide this service?
Describe how this approach or model
would work and illustrate with
examples where useful.
c. How will such a service be made
accessible to those it is intended to
help?
d. How would accessibility for
persons with special needs (e.g. persons
VerDate Aug<31>2005
15:14 May 22, 2006
Jkt 208001
with disabilities, persons who are not
proficient in English) be ensured?
e. What ownership, management,
governance, financing, and
sustainability issues arise as a result of
the recommended approach, and how
should these issues be resolved?
f. How should the effort(s) be funded?
Who should pay for the service and
infrastructure?
2. Function, Capabilities, and
Performance
a. What types of information do you
view as relevant, necessary, or useful to
access in an emergency (e.g., birth
certificates, wills, medical information)?
Of these types of information, which
would be easy to deposit with the type
of service contemplated in this Request
for Information (RFI), which would be
difficult, and why?
b. What is the best approach for
storage and retrieval of this information?
c. What limits should there be on the
availability of information via the
service contemplated by this RFI, and
how should those limits be
implemented?
d. What are the necessary features,
capabilities, and attributes of the service
contemplated by this RFI?
e. How should this service support
disaster survivors in providing
documentation necessary to obtain
Federal, local, and non-governmental
disaster relief benefits?
f. What are the performance
requirements of the service or the
system that supports it?
g. What disclosures should be
required and under what circumstances
or conditions would such disclosures be
made?
3. Rights, Rules, Responsibilities, and
Enforcement
a. Whom do you view as the
interested parties? How should
interested parties interact? What are
their roles and responsibilities?
b. What is an inappropriate
disclosure? Who has liability for
inappropriate or unlawful disclosures,
or harms that come as a result of storage
of personal data?
c. What enforcement mechanisms are
appropriate to protect information, and
who should be responsible for
enforcement?
d. What rights should individuals
who deposit their information have with
respect to the custodian?
e. What rights should be assigned to
custodians providing the service?
f. What data disclosure laws and
policies should apply? Who will have
access to the information, and under
what circumstances?
PO 00000
Frm 00038
Fmt 4703
Sfmt 4703
29643
g. What other types of rules should
apply to the service?
h. What legal implications are there,
if any, of storing electronic copies of
important documents and making them
available via such a service to those
permitted to receive the information? If
there are impediments, how should they
be overcome? (For example, how will
the contents of documents be
authenticated?)
i. If residents of one State are
permitted to store their documents in
another State, how would protections
travel across States?
4. Security and Standards
a. What administrative, technical, and
physical security approaches should be
considered?
b. What security standards
mechanisms, if any, should be adopted
by or imposed on the custodians?
c. How will access and authentication
controls be implemented?
d. What technical, data, format, or
performance standards should be
considered?
e. How will the identity of the
individual requesting information be
verified?
5. Potential Federal Roles
a. What role, if any, should the
Federal government play in encouraging
the development of services whereby
individuals can voluntarily deposit their
personal identifying information for
access during or following an
emergency?
b. What role, if any, should the
Federal government play in encouraging
citizens to voluntarily collect and store
their personal information for access
during or following an emergency?
Please feel free to add any other
comments, suggestions, or creative ideas
to your response.
Issued on May 17, 2006.
Charles Havekost,
Deputy Assistant Secretary for Information
Technology and Chief Information Officer.
[FR Doc. E6–7833 Filed 5–22–06; 8:45 am]
BILLING CODE 4150–37–P
DEPARTMENT OF HEALTH AND
HUMAN SERVICES
Centers for Medicare & Medicaid
Services
Privacy Act of 1974; Report of a
Modified or Altered System of Records
Department of Health and
Human Services (HHS), Centers for
Medicare & Medicaid Services (CMS).
AGENCY:
E:\FR\FM\23MYN1.SGM
23MYN1
]]>Agencies
[Federal Register Volume 71, Number 99 (Tuesday, May 23, 2006)]
[Notices]
[Pages 29642-29643]
From the Federal Register Online via the Government Printing Office [www.gpo.gov]
[FR Doc No: E6-7833]
-----------------------------------------------------------------------
DEPARTMENT OF HEALTH AND HUMAN SERVICES
Request for Information: Voluntary Storage of Personal Data in
Preparation for Emergencies
AGENCY: Department of Health and Human Services.
ACTION: Request for information.
-----------------------------------------------------------------------
SUMMARY: To improve emergency preparedness, response and recovery
efforts, HHS invites public comment on the availability or feasibility
of private sector services through which individuals could voluntarily
submit their personal information for storage so that they, their
family members, or other designated individuals could access the
information in an emergency. HHS invites all comments, suggestions,
recommendations, and creative ideas on the establishment of voluntary
nationwide services that can best offer this capability. This Request
for Information (RFI) is intended to provide a synthesis of ideas for
consideration, and it is not intended to be part of any procurement
process.
DATES: Responses should be submitted to the Department of Health and
Human Services on or before 5 p.m., EDT, July 24, 2006.
ADDRESSES: Electronic responses are preferred and should be addressed
to Disaster--Storage--RFI@hhs.gov. Written responses will also be
accepted. Please send to: Department of Health and Human Services, Room
434E, 200 Independence Avenue, SW., Washington, DC 20201, Attention:
IMDA RFI Response.
A copy of this RFI is also available on the World Wide Web at
https://www.hhs.gov/emergency/rfi/. Please follow the instructions for
submitting responses.
Public Access: This RFI and all responses will be made available to
the public in the HHS Public Reading Room, 200 Independence Avenue,
SW., Washington, DC. Please call 202-690-7453 between 9 a.m. and 5 p.m.
EDT to arrange access to the Public Reading Room. The RFI and all
responses will also be made available on the World Wide Web at https://
www.hhs.gov/emergency/rfi/. Any information you submit, including
addresses, phone numbers, e-mail addresses, and personally identifiable
information, will be made public. Do not send proprietary, commercial,
financial, business confidential, trade secret, or personal information
that should not be made public.
FOR FURTHER INFORMATION CONTACT: Dr. Helga Rippen, Secretary's
Transformation Action Team for Preparedness, 202-690-7100.
SUPPLEMENTARY INFORMATION: Hurricanes Katrina and Rita were two of the
most devastating hurricanes ever recorded, affecting approximately
90,000 square miles and 1.5 million people. The hurricane and flooding
caused the evacuation of the city of New Orleans, marking the first
time a major American city has been completely evacuated. More than
700,000 households have received rental assistance from the Federal
Emergency Management Agency, and more than 1.4 million families (over 4
million people) received emergency financial assistance from the
American Red Cross. The hurricane did not discriminate among
businesses, governments, and not-for-profit institutions: financial
institutions, healthcare facilities, local courthouses, and academic
institutions alike suffered devastating destruction. In many cases,
significant personal and institutional records were lost.
In response to the loss and destruction of important documents
experienced by the survivors of these hurricanes, the White House
report, The Federal Response to Hurricane Katrina: Lessons Learned,
recommended that the Federal government work with the private sector to
encourage the development of a capacity to voluntarily store and
retrieve personal information that would be useful in the event of a
natural or manmade disaster, such as an earthquake, flood, pandemic
influenza, or terrorist event. Specifically, the report recommended
that the Federal government should:
encourage the private sector development of a capability for
individuals to voluntarily submit their personal identifying
information for virtual storage that citizens and their families
could access during emergencies. The capability is best thought of
as a 21st century version of a bank vault, with virtual safe deposit
boxes for information. Disaster victims could access the virtually
stored data to apply for Federal assistance, medical treatment, or
insurance benefits. Because of the sensitivity of the personal data
stored, strict privacy limitations and protections would be
required.
Appendix A, Recommendation 66, at page 107. The White House report,
The Federal Response to Hurricane Katrina: Lessons Learned, is
available on the
[[Page 29643]]
Web at https://www.whitehouse.gov/infocus/hurricane/.
This Request for Information is a first step in understanding the
availability or feasibility of such services and how the Federal
government might encourage citizens to voluntarily maintain critical
information so that it can be accessed easily during an emergency. This
Request for Information is not intended as a prelude to any procurement
by the Federal government. Rather, it is intended to elicit suggestions
from members of the public about capabilities that should be considered
for maintaining personal information and to provide ideas for
consideration as to how to encourage individuals and the private sector
to take action in preparation for emergencies.
In particular, HHS seeks to understand the roles and
responsibilities of individuals who provide and maintain this
information, including the relationship between custodians and
individuals who use their services. Respondents should differentiate
between capabilities that already exist and those which are planned or
desirable in the future.
A separate Request for Information will be published in the Federal
Register seeking input about the availability or feasibility of
electronic benefits services for disaster victims that would facilitate
the provision of Federal, state, local, and non-governmental human
assistance programs in an efficient manner.
HHS encourages all potentially interested parties--individuals,
consumer groups, associations, governments, non-governmental
organizations, and commercial entities--to respond. To facilitate
review of the responses, please reference the question number in your
response.
Questions for Response
1. Approach, Finance, Sustainability, and Roles
a. What models and options are currently available that provide or
support the capability to provide ready access to critical documents
during or following an emergency?
b. What models and options should be available, that are currently
not available, to provide this service? Describe how this approach or
model would work and illustrate with examples where useful.
c. How will such a service be made accessible to those it is
intended to help?
d. How would accessibility for persons with special needs (e.g.
persons with disabilities, persons who are not proficient in English)
be ensured?
e. What ownership, management, governance, financing, and
sustainability issues arise as a result of the recommended approach,
and how should these issues be resolved?
f. How should the effort(s) be funded? Who should pay for the
service and infrastructure?
2. Function, Capabilities, and Performance
a. What types of information do you view as relevant, necessary, or
useful to access in an emergency (e.g., birth certificates, wills,
medical information)? Of these types of information, which would be
easy to deposit with the type of service contemplated in this Request
for Information (RFI), which would be difficult, and why?
b. What is the best approach for storage and retrieval of this
information?
c. What limits should there be on the availability of information
via the service contemplated by this RFI, and how should those limits
be implemented?
d. What are the necessary features, capabilities, and attributes of
the service contemplated by this RFI?
e. How should this service support disaster survivors in providing
documentation necessary to obtain Federal, local, and non-governmental
disaster relief benefits?
f. What are the performance requirements of the service or the
system that supports it?
g. What disclosures should be required and under what circumstances
or conditions would such disclosures be made?
3. Rights, Rules, Responsibilities, and Enforcement
a. Whom do you view as the interested parties? How should
interested parties interact? What are their roles and responsibilities?
b. What is an inappropriate disclosure? Who has liability for
inappropriate or unlawful disclosures, or harms that come as a result
of storage of personal data?
c. What enforcement mechanisms are appropriate to protect
information, and who should be responsible for enforcement?
d. What rights should individuals who deposit their information
have with respect to the custodian?
e. What rights should be assigned to custodians providing the
service?
f. What data disclosure laws and policies should apply? Who will
have access to the information, and under what circumstances?
g. What other types of rules should apply to the service?
h. What legal implications are there, if any, of storing electronic
copies of important documents and making them available via such a
service to those permitted to receive the information? If there are
impediments, how should they be overcome? (For example, how will the
contents of documents be authenticated?)
i. If residents of one State are permitted to store their documents
in another State, how would protections travel across States?
4. Security and Standards
a. What administrative, technical, and physical security approaches
should be considered?
b. What security standards mechanisms, if any, should be adopted by
or imposed on the custodians?
c. How will access and authentication controls be implemented?
d. What technical, data, format, or performance standards should be
considered?
e. How will the identity of the individual requesting information
be verified?
5. Potential Federal Roles
a. What role, if any, should the Federal government play in
encouraging the development of services whereby individuals can
voluntarily deposit their personal identifying information for access
during or following an emergency?
b. What role, if any, should the Federal government play in
encouraging citizens to voluntarily collect and store their personal
information for access during or following an emergency?
Please feel free to add any other comments, suggestions, or
creative ideas to your response.
Issued on May 17, 2006.
Charles Havekost,
Deputy Assistant Secretary for Information Technology and Chief
Information Officer.
[FR Doc. E6-7833 Filed 5-22-06; 8:45 am]
BILLING CODE 4150-37-P
