ACPM Policy 2002-060 (F)

The American College of Preventive Medicine is opposed to the use of genetic information by employers, health insurers, or unions to prevent the enrollment, hiring, promotion, or presentation for employment of any individual. In support of this position, the ACPM supports laws that would prohibit the collection of genetic information about current or prospective employees by unions, employers or health insurers.

With the development of the description of the human genome, and increasing knowledge of gene locations and functions, the rate of genetic testing is increasing for prenatal screening, carrier detection, early disease onset detection, haplotyping and genotyping for optimal pharmaceutical therapy, cancer typing and treatment, aging, and other potential purposes and uses. While there may be useful derivatives of the current and future uses of genetic information about individuals that could be helpful in understanding future economic costs to health plans, and potential disability costs for employers, including absenteeism, disability, life insurance, and other health-related costs, the risks to individual autonomy and social justice outweigh the potential lost opportunity for such data collection. Further, given the common misunderstandings of the public at large about the meaning and implications of deviations from "normal" genotypes, communication of genetic variation is often of serious concern.

The purpose of health insurance, whether delivered through an insurance company/health plan, or as a benefit from an employer, is to pool risk and assure coverage for individuals to mitigate costs associated with unexpected or unpredictable health conditions. With the exception of current opportunities for prenatal screening (and therefore early termination of pregnancy), an individual's human genotype is not controllable by the individual or his/her family. Hence, genotype information should be irrelevant to underwriting health insurance-related risk pools.

In light of the increasing opportunity for health insurers and employers to obtain genetic information that could be used to discriminate against the hiring, enrollment, discharge, or progress of an employee within a company or a health plan for reasons not controllable by the individual, it is appropriate pre-emptively to recommend guidelines for the prohibition of discrimination based on genetic information.

ACPM will support legislation that does the following in regard to health insurance (no matter how originated):

• prohibit enrollment restriction and premium adjustment on the basis of predictive genetic information or information derived from genetic services;

• ban health plans and insurers from requesting or requiring that an individual have a genetic test performed or reveal the results of a genetic test; and

• prohibit health plans and insurers from pursuing or being provided information regarding genetic information or use of genetic services.

With regard to employment discrimination (whether by employers, employment agencies, labor organizations, and training programs), the ACPM supports the following:

• banning discrimination in hiring, compensation, and other personnel processes;

• prohibiting employers from requiring or requesting that employees disclose predictive genetic information;

• allowing genetic testing only to monitor the adverse effects of hazardous workplace exposures; and

• requiring predictive information possessed by employers to be confidentially maintained and disclosed only to the employee on request and to researchers.

In regards to monitoring the adverse effects of hazardous workplace exposures, if an employer offers such monitoring and the employee refuses to be monitored, the ACPM supports legislation that indemnifies the employer from illnesses directly resulting from the employer's inability to monitor.

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¹Much of this language is derived from an article in JAMA (2002; 288:819, August 21) that reviewed HR602 and S318. Both bills are called "The Genetic Nondiscrimination in Health Insurance and Employment Act."

²The employer can get caught in a catch-22 – the employee prohibits monitoring for adverse workplace effects that are genetically synergistic, yet if the employee becomes ill because of the employer cannot monitor the employee and limit his/her exposure the employer is then liable for workers compensation or other liabilities. This would address that issue.