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National Cancer Advisory Board
Congressional Activities for the 107th Congress
September 10-12, 2001
GENETIC PRIVACY, DISCRIMINATION AND MEDICAL INFORMATION
STATUS AND OUTLOOK
Genetic information is being discovered at such an accelerated rate that ethical questions regarding the privacy and confidentiality, ownership and control, and consent to disclosure and use of genetic information need to be carefully considered at an equally fast pace. The Health Insurance Portability and Accountability Act (HIPAA) of 1996 provided some protection against genetic discrimination, such as requiring that genetic information may not be used to deny or limit health insurance coverage for members of a group plan. However, some shortcomings have been identified. HIPAA failed to provide protection in all cases for individuals who seek insurance in the individual or self-employment market. The law did not prohibit rating based on genetic information, nor did it prevent health insurers from disclosing or demanding access to genetic information.
The bills described in this section deal with some of the ramifications of the use of genetic research, and seek to address shortcomings in the current law.
PENDING LEGISLATION:
Resolutions
H.J.Res. 38 - Disapproving the DHHS Rule Relating to Standards of Privacy of Identifiable Health Information. This joint resolution was introduced by Rep. Ron Paul (R-TX) on March 15, 2001 to express disapproval of the rule submitted by the Department of Health and Human Services on December 28, 2000, relating to standards for privacy of individually identifiable health information. The resolution states that such rule shall have no force or effect. HJR was referred to the House Committees on Education and the Workforce, Ways and Means, and Energy and Commerce. As of September 3, 2001, there are 14 cosponsors (12-R; 1-D, 1-I).
Bills
S. 30 - Financial Information Privacy Protection Act of 2001. Senator Paul Sarbanes (D-MD) introduced S 30 on January 22, 2001 to strengthen control by consumers over the use and disclosure of their personal financial and health information by financial institutions. Section 4 restricts the use of health information in making credit and other financial decisions. S 30 was referred to the Senate Banking Committee. As of September 3, 2001, the bill is supported by 7 cosponsors, all Democrat.
S. 382 - Genetic Information Nondiscrimination in Health Insurance Act. A bill to prohibit discrimination on the basis of genetic information with respect to health insurance. Introduced on February 15, 2001 by Sen. Olympia Snowe (R-ME) and referred to the Senate Committee on Health, Education, Labor and Pensions. Senator Snowe stated that the bill "ensures that people cannot be denied insurance coverage on the basis of genetic information, cannot be dropped from coverage on the basis of genetic information, cannot be charged exorbitant premiums based on genetic information, and cannot be discriminated against for requesting or receiving genetic services." The bill includes a safe harbor provision to prevent conflict with the new HHS medical confidentiality regulations. As of September 3, 2001, there are 5 cosponsors (4-R; 1-I).
S. 450 - Financial Information Privacy Protection Act of 2001. A bill to amend the Gramm-Leach-Bliley Act to provide for enhanced protection of nonpublic personal information, including health information. Introduced on March 1, 2001 by Sen. Bill Nelson (D-FL) and referred to the Senate Committee on Banking, Housing, and Urban Affairs. As of September 3, 2001, there are no cosponsors.
H.R. 583 - Privacy Commission Act. A bill to establish the Commission for the Comprehensive Study of Privacy Protection. Introduced on February 13, 2001 by Rep. Asa Hutchinson (R-AR) and referred to the House Committee on Government Reform. On May 8, 2001, the Subcommittee on Government Efficiency, Financial Management and Intergovernmental Relations marked up HR 583 and forwarded to the full committee for consideration. As of September 3, 2001, there are 18 cosponsors (16-R; 2-D).
H.R. 1215 - Ensuring Confidentiality for Medical Records and Health Care - Related Information. A bill to ensure confidentiality with respect to medical records and health information. The bill was introduced by Rep. James Greenwood (R-PA) on March 27, 2001 and referred to the Committees on Judiciary, and Energy and Commerce. As of September 3, 2001, there are 3 cosponsors, all Republican.
H.R. 602/S. 318 - Genetic Nondiscrimination in Health Insurance and Employment Act. This measure was introduced on February 13, 2001 in the House by Rep. Louise Slaughter (D-NY), and in the Senate by Sen. Thomas Daschle (D-SD) to prohibit discrimination on the basis of genetic information with respect to health insurance. HR 602 was referred to the House Ways and Means Committee, and as of September 3, 2001 is supported by 252 cosponsors (48-R; 203-D; 1-I). S 318 was referred to the Senate Committee on Health, Education, Labor and Pensions and is supported by 24 cosponsors, all Democrat.
S. 19 - Protecting Civil Rights for All Americans Act. This measure was introduced January 22, 2001 by Senator Tom Daschle (D-SD) and referred to the Committee on Judiciary. As of September 3, 2001, there are 27 cosponsors, all Democrat.
S. 836 - Providing for coordination of implementation of administrative simplification standard for health care information. The measure was introduced by Senator Larry Craig (R-ID) on May 7, 2001 to give providers and plans more time to comply with the changes in administrative regulations, and to prevent providers from duplicating systems updates. The bill delays final implementation of the original bill from October 31, 2003 to October 16, 2004, allowing companies to make all the changes in administrative codes and technology at once. S 836 was referred to the Committee on Finance. As of September 3, 2001, the bill is supported by 12 cosponsors (5-R; 7-D).
S. 851 - Citizens' Privacy Commission Act. A bill to establish a commission to conduct a study of government privacy practices. The bill was introduced by Senator Fred Thompson (R-TN) on May 9, 2001 and referred to the Committee on Governmental Affairs. As of September 3, 2001, there are 6 cosponsors (4-R; 2-D).
S. 1055 - Privacy Act of 2001. To require the consent of an individual prior to the sale and marketing of such individuals personally identifiable information. Introduced on June 14, 2001 by Senator Dianne Feinstein (D-Ca) and referred to the Committee on Judiciary. As of September 3, 2001, there are no cosponsors.
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