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Practice Area: Medical Privacy

The Medical Privacy Debate - an Overview

by Steve C. Posner
Medical privacy is one of several areas of American life in which loss of privacy is a concern. A bill now before Congress (H.R. 503) describes increasing citizen concern about the security and use of personal information including educational records, library records, magazine subscription records, records of purchases and payments, driver's license data -- and, of course, medical records. The bill warns of inadequate federal guidelines and a patchwork of confusing state and local rules regarding privacy of medical records. Medical privacy is hotly debated and, as in so many debates, the key to understanding lies in the balancing of interests. This page presents the dangers and benefits of disclosure, the current statutory and regulatory climate and the interest groups trying to change it, and the key issues in pending legislation along with a summary of the bills now before Congress.
a. Dangers and Benefits of Disclosure
   
dDangers Benefits
  Employer intrusion/action (1/3 of Fortune 500 companies review medical records before hiring or promoting   Improved care through faster access to patient information
  Financial discrimination (Loan and credit card applications)   More cost-efficient insurance services
  Denial of insurance coverage or increased premiums   Improved drug research
  Marketing intrusion (Patients phoned by drug salespeople)   Law enforcement authorities get fast access to criminal's state of mind in emergencies
  Erosion of doctor/patient trust (Treatment is discouraged)   This line is just fillerThis line is fillerThis line is filler This line is filler
 
b. Current statutory and regulatory climate, and relevant interest groups

Patients
Physicians
Psychotherapists

HIPAA - (Health Insurance Portability and Accountability Act of 1996)

(Requires Dept. of Human Health & Services to set privacy regulations)

HHS Regulations (2000)

State laws including Colorado statutes
Insurers Law Enforcement Employers Hospitals
Information Providers and Marketers
 Lenders & Credit Companies

 

 

 
d. Key issues in pending legislation and a look at bills now before Congress
The most debated issues are (1) whether stronger state measures are preempted by the federal bill; (2) the right of the patient to sue; (3) patients' rights to see, copy and amend records; (4) whether the bill prohibits all disclosure not expressly allowed (the "malum prohibitum" approach); and (5) amendment of the "Common Rule" re federally funded medical research to include privacy protections. The following chart compares features of bills now before the 107th Congress, and includes information on each bill's sponsor and the sponsor's party affiliation. Interestingly, some of the patients' "bills of rights" lack substantial privacy protections. Another issue that is too complex for this table is exactly what medical information each bill protects.
Bill Sponsor Relevant Purpose Preemption Right to Sue Right to See, Copy and/or Amend Malum Prohibitum Common Rule Incorpration of Privacy Protections

H.R. 583 Privacy Commission Act

 Hutchinson (R) Seeks to create a commission to study privacy and report to Congress. ? ? ? ? ?
H.R. 602 Genetic Nondiscrimination in Health Insurance and Employment Act Slaughter (D) (150+ co-sponsors, mostly Democrats) Prohibits discrimination based on genetic information, specifically by insurers, employers, labor organizations and trainers. Amends the Employment Retirement Income Security Act of 1974 (ERISA), the Public Service Health Act (PHSA), the Internal Revenue Code (IRC) and the Social Security Act (SSA). Does not preempt stronger state laws. Compensatory and money damages, incl. attorney fees, expert witness fees and costs. Authorizes suit against employers, labor organizations or trainers in federal or state court. EEOC can enforce. Disclosure to employee upon request. No. Prohibits certain disclosures and authorizes the Secretary of HHS to prohibit others. Calls for HHS to regulate of Congress doesn't act w/in 2 yrs of passage.
S. 318 fffff Genetic Nondiscrimination in Health Insurance Act Daschle (D) (17 Democratic co-sponsors) Any protected genetic information in an employer's files becomes part of the employee's confidential medical file. Amends ERISA, PHSA and IRC. Does not preempt stronger state laws. Compensatory and money damages, incl. attorney fees, expert witness fees and costs. EEOC can enforce. Civil monetary penalties provided for. Information to be disclosed to employee on request. Yes. Employer may disclose only under a few defined circumstances.  
S. 382 Genetic Information Nondiscrimination in health Insurance Act of 2001 Snowe (R) (5 Republican co-sponsors) Intended to protect predictive genetic information. Generally, insurer cannot require, or even request an individual to disclose this information. It may, however, request disclosure of information for purposes of diagnosis, treatment or payment. Amends PHSA , ERISA and IRC. Not mentioned. a a No. Insurer must inform individual of its confidentiality policies and must comply with HHS regulations. a
S 450 Financial Institution Privacy Protection Act of 2001 Nelson (D) (no co-sponsors) Amends the Gramm-Leach-Bliley Act to allow enhanced protection of personal information including medical information. Provides that an individual must "opt-in" for such information to be shared. Prohibits financial institutions from denying services based on an individual's refusal to opt in. Not mentioned. Attorney General may bring enforcement action. Civil penalties fo $100,000 per violation. Officers and directors personally liable up to $10,000 each. a a a
H.R. 526 Bipartisan Patient Protection Act of 2001 Greg (D) (50+ sponsors incl. 4 Recpublicans) Intended to protect consumers in managed care plans. Amends PHSA, ERISA and IRC. The appropriate beuracracy (depending on circumstance) is to ensure that entities conducting externam reviews maintain appropriate confidentiality re health recrods. Preemption rules are too complex for this chart. Yes, but for denial of services. Privacy violations are not mentioned. Provides for disclosure of HMO policies but is silent re access to personal information. a Not mentioned.
S. 283 Bipartisan Patient Protection Act of 2001 McCain (R) (16 co-sponsors, incl. 1 Republican) Intended to protect consumers in managed care plans. Amends PSHA, ERISA and IRC. Preemption rules are too complex for this chart. Yes, but for denial of services. Privacy violations are not mentioned. Provides for disclosure of HMO policies but is silent re access to personal information. a Not mentioned.

S. 19. Protecting Civil Rights for All Amcericans Act

 

 Daschle (D) (26 Democratic co-sponsors) Authorizes the U.S Attorney General to assist, investigate or prosecuite felonious crimes of violence based on race, color, religin, national origin, gender, sexual orientation or disability or in violation of State or Indian hate crime laws. Title IV prohibits health insurance discrimination based on predictive genetic information and prohibits drequesting, requiring, collecting, purchasing or disclosing such information unless authorized by the individual. Any predictive genetic information in an employer's files becomes part of the employee's confidential medical file. Amends ERISA and PHSA. Does not preempt stronger state laws and amends ERISA and PHSA accordingly. Compensatory and money damages, incl. attorney fees, expert witness fees and costs. EEOC can enforce, Information to be disclosed to employee on request. Yes. Employer may disclose only under a few defined circumstances a
H.R. 803 Medicare Modernization and Solvency Act of 2001 Fortney (D) Intended to make Medicare more competitive and efficient. Adopts HHS rules on privacy and automatically adopts any more protective standards that may be passed into law or promulgated in regulations. Comptroller General to monitor extent to which pivacy of medical records is safeguarded and maintained. Not mentioned. Not mentioned. ?a a a

H.R. 16 dd National Health Insurance Act

 Dingell (D) Intended to provide a program of national health insurance. Establishes a National Health Insurance Board under HHS. All individually identifiable information shall be held confidential except for statistical purposes and shall not be disclosed to the public except as necessary to administer laws. Not mentioned. No private right of action mentioned; violation is a misdemeanor to be punished by up to 1 year in prison or a fine of $50,000.00 a a ?a


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