American Statistical Association’s (ASA) Committee on Privacy and Confidentiality

CDC-CSTE Intergovernmental Data Release Guidelines Working Group (DRGWG)

Confidentiality and Data Access Committee (CDAC)

Department of Health and Human Services (DHSS) Secretary’s Advisory Committee on Human Research Protections (SACHRP)

Human Subject Protection and Disclosure Risk Analysis

Institute of Medicine (IOM) Committee on Assessing the System for the Protection of Human Research Participants

National Bioethics Advisory Committee (NBAC)

National Human Research Protections Advisory Committee (NHRPAC’s) Social and Behavioral Science Working Group (SBSWG)

Office of Science and Technology Policy (OSTP), Committee on Science, Human Subjects Research Subcommittee (HSRS)

Panel on Confidentiality and Data Access

Panel on Confidentiality Issues Arising from the Integration of Remotely Sensed and Self-Identifyng Data

Panel on Confidential Data Access for Research Purposes

Panel on Institutional Review Boards, Surveys, and Social Science Research

Privacy, Confidentiality and Data Sharing Workgroup (PCDS)

Purpose:
• To review legislation in the area of privacy and confidentiality and to monitor the application of privacy and confidentiality laws, regulations, and guidelines.
• To communicate to the ASA members activity in privacy and confidentiality relevant to statistics.
• To provide an early warning system to the Board of Directors on privacy and confidentiality matters that may affect statisticians.
• To serve as a focal point within ASA for contact with other associations on matters related to privacy and confidentiality.
• To monitor and encourage new technical developments related to privacy and confidentiality of data collected or used for statistical purposes.
• To develop appropriate liaison with Congressional Committees and Federal agencies on matters relating to privacy and confidentiality.
• To represent ASA in Congressional hearings on privacy and confidentiality, at the request of the Board of Directors.
• To make suggestions to the Board of Directors for needed study and action in the area of privacy and confidentiality.

Chair: Alvan Zarate, National Center for Health Statistics

Website includes: Guidelines for government agencies and international organizations; Statistical Methods for privacy, confidentiality, and disclosure limitations; Human Subjects Protection in Research and Institutional Review Boards (IRBs); Health Care, Bioethics, and Personal Health Information; Topics in Education; Topics in Finance; Ethics, Principles, and Standards; Legal and regulatory sites; and Training opportunities.

CDC-CSTE Intergovernmental Data Release Guidelines Working Group (DRGWG)
Convened by the Centers for Disease Control and Prevention (CDC) and the Council of State and Territorial Epidemiologists (CSTE), February 2001.

Purpose: To revise the notifiable disease data release procedure and to address the need for uniformity of data re-release, across CDC programs.

Membership: ATSDR, AEP, NCBDDD, NCCDPHP, NCEH, NCHS, NCHSTP, NCID, NCIPC, NIOSH, NIP, PHPPO, OD, and CSTE (5 members)
Chairs: RA Jajosky, CDC Epidemiology Program Office and S. Macdonald, CSTE

Report: CDC-CSTE Intergovernmental Data Release Guidelines Working Group (DRGWG) Report: CDC-ATSDR Data Release Guidelines and Procedures for Re-release State-Provided Data (2005) http://www.cdc.gov/od/foia/policies/drgwg.pdf .

Confidentiality and Data Access Committee (CDAC)
http://www.fcsm.gov/committees/cdac/cdac.html
http://www.fcsm.gov/committees/cdac/cdacpaper.pdf

Convened by The Office of Management and Budget’s (OMB) Federal Committee on Statistical Methodology (FCSM) as the Interagency Confidentiality and Data Access Group (ICDAG) in 1996 (recommended in FCSM’s Statistical Policy Working Paper #22 Report on Statistical Disclosure Limitation Methodology, May 1994).

Purpose: To serve as a forum for staff members of statistical agencies “to promote cooperation and sharing of information concerning data access issues and statistical disclosure methods among Federal agencies.”

Chair: Steve Cohen, Bureau of Labor Statistics
Vice-Chair Philip Steel, US Census Bureau

Department of Health and Human Services (DHSS) Secretary’s Advisory Committee on Human Research Protections (SACHRP)
http://www.hhs.gov/ohrp/sachrp/index.html

Replaced the National Human Research Protections Advisory Committee (NHRPAC) in October 2002 (first Inaugural Meeting in July 2003).

Purpose: “To advise the Secretary of DHHS on all matters related to human subjects with a particular emphasis on special populations including children, neonates, decisionally impaired individuals, and prisoners. SACHRP also is mandated to address… research with individually identified samples, data, or information…” (Inaugural Meeting, July 22, 2003).

Chair: Ernest Prentice, University of Nebraska Medical Center

Human Subject Protection and Disclosure Risk Analysis

Program conducted by the the Inter-university Consortium for Political and Social Research (ICPSR) and the Survey Research Center (SRC), in the Institute for Social Research (ISR), at the University of Michigan.

Purpose: This program will improve scientific understanding and enhance prevention of risks to participants in social science research, through four coordinated and tightly linked projects.

Principal Investigator: Myron P. Gutmann, Director and Senior Research Scientist
Inter-university Consortium for Political and Social Research
Institute for Social Research
University of Michigan

Website Includes: Lists of related sites, conferences, categorized citations, and information on each of the four projects of the program, including 1) "Informed Consent and Perceptions of Risk and Harm in Survey Participation"; 2) "Estimation of Disclosure Risk and Statistical Methods for Disclosure Limitation"; 3) "Statistical Disclosure Control Best Practices and Tools for the Social Sciences"; and 4) "Resources for the Secure Dissemination of Human Subjects Data".

Institute of Medicine (IOM) Committee on Assessing the System for the Protection of Human Research Participants
http://www.iom.edu/Activities/Research/ProtectParticipants.aspx

Convened by the Institute of Medicine September 2001, duration 24 months.

Purpose: To conduct a two-phase study to address 1) accreditation standards for Human Research Participant Protection Programs (HRPPPs), 2) the overall structure and function of HRPPPs, including but not restricted to Institutional Review Boards, and 3) criteria for evaluating the performance of HRPPPs.

Reports: Preserving Public Trust: Accreditation and Human Research Participant Protection Programs (IOM, April 2001).
Responsible Research: A Systems Approach to Protecting Research Participants (IOM, 2002).

National Bioethics Advisory Committee (NBAC)
http://www.bioethics.gov/

Established in 1995 by President Clinton by Executive Order 12975, Protection of Human Research Subjects and Creation of National Bioethics Advisory Commission. Charter expired on October 3, 2001 and not renewed.

Purpose: 1) To provide advice and make recommendations to the National Science and Technology Council and other government entities regarding bioethical issues related to research on human biology and behavior; 2) To identify broad principles to govern ethical conduct of research; 3) To respond to requests from the National Science and Technology Council, Congress, and the public.

(See also President’s Council on Bioethics, established November 28, 2001, Executive Order 13237, http://www.bioethics.gov/)

National Human Research Protections Advisory Committee (NHRPAC’s) Social and Behavioral Science Working Group (SBSWG) (see American Sociological Association)

Purpose: To develop guidelines for the review of social and behavioral science research by institutional review boards (IRBs) addressing issues such as the review of public-use data files, risk and harm, and third parties. (Although DHHS’ NHRPAC was disbanded in 2002 and replaced with SACHRP, the SBSWG continues its work independently of the SACHRP.)

Staff: Paula Skedsvold, American Sociological Association

Office of Science and Technology Policy (OSTP), Committee on Science, Human Subjects Research Subcommittee (HSRS)
Purpose: To provide advice about interdepartmental issues in protection of human participants to OSTP’s Committee on Science and to the departments and agencies that promulgate the “Common Rule”.

Chair: OHRP’s Director (Bernard A. Schwetz, OHRP Acting-Director)

Panel on Confidentiality and Data Access
Convened by the Committee on National Statistics (CNSTAT) of the National Academy of Sciences-National Research Council and the Social Science Research Council (SSRC) in 1989. Supported by the National Science Foundation, the Bureau of the Census, the Bureau of Labor Statistics, the IRS Statistics of Income Division, The National Institute on Aging, the National Center for Education Statistics, and other Federal agencies.

Goal: To provide recommendations to Federal agencies to aid them in their stewardship of data for public decisions and research.

Members: Experts in the fields of ethics, privacy, respondent issues, public policy, legislation, history of the Federal statistical system, and statistics.

Chair: George T. Duncan, Carnegie Mellon University

Report: Private Lives and Public Policies: Confidentiality and Accessibility of Government Statistics (NRC and SSRC, 1993).

Panel on Confidentiality Issues Arising from the Integration of Remotely Sensed and Self-Identifyng Data

http://www8.nationalacademies.org/cp/projectview.aspx?key=HDGC-I-03-01-A

Created by the Committee on Human Dimensions of Global Change (CHDGC) of the National Academy of Sciences-National Research Council. Supported by The U.S. Department of Health and Human Services, The National Science Foundation, and The National Aeronautics and Space Administraton.

Goal: To "address the scientific value of linking remotely sensed and self-identifying social science data; discuss and evaluate tradeoffs involving data accessibility, confidentiality, and data quality; consider the legal issues raised by releasing remotely sensed data in forms linked to self-identifying data; assess the costs and benefits of different methods for addressing confidentiality in the dissemination of such data; and suggest appropriate models for addressing the issues raised by the combined needs for confidentiality and data access".

Chair: Myron P. Gutmann, Inter-university Consortium for Political and Social Research (ICPSR),University of Michigan

Panel on Confidential Data Access for Research Purposes http://www7.nationalacademies.org/cnstat/Data_Access_Panel.html

Convened by the Committee on National Statistics (CNSTAT), National Research Council, January 2003

Purpose: To follow-up topics discussed in October 1999 CNSTAT Workshop: to study and make recommendations about how microdata (especially longitudinal microdata) can best be made available to researchers while protecting respondent confidentiality.

Chair: Eleanor Singer, Institute for Social Research, University of Michigan

Panel on Institutional Review Boards, Surveys, and Social Science Research
Convened by the Committee on National Statistics (CNSTAT) and the Board on Behavioral, Cognitive, and Sensory Sciences (BCSSE), National Academies’ National Research Council, June 2001.

Purpose: To examine the structure, function, and performance of the IRB system as it relates to social, behavioral, and economic sciences (SBES) research and to recommend research and practice to improve the system.

Chair: Cora B. Marrett, University of Wisconsin

Report: Protecting Participants and Facilitating Social and Behavioral Sciences Research (NRC, 2003)

Privacy, Confidentiality and Data Sharing Workgroup (PCDS)

Convened on December 9, 2002 by the Public Health Data Standards Consortium (PHDSC)

Purpose: To focus on issues of patient privacy and confidentiality while allowing the necessary data sharing for public health and health services research purposes: 1) represent public health and health services research interests on privacy issues, including attending key meetings, 2) provide education, partnerships, and collaboration at the local, state, and national levels, 3) to partner with Standard Development Organizations (SDO), professional organizations, consumer organizations, and others to obtain guidance and clarification … about privacy, confidentiality, and data sharing issues, 4) to collaborate with the Health Care Services Data Reporting Work Group and other Consortium workgroups to develop related projects that promote data standardization, 5) to conduct outreach, and 6) to collect data from Consortium members who have difficulty obtaining protected health information from covered entities because of the privacy regulation.

Chair: Johnathan Lawniczak, AcademyHealth