Nondiscrimination in Employment
Based on Genetic and Other Health Information

(Approved by the IEEE-USA
Board of Directors, 20 August 2002)

IEEE-USA supports restricting the use of non-job-related genetic and other health information in employment decision-making, to discourage potential employment discrimination.

IEEE-USA recognizes that the American public needs to be able to embrace the increasing health benefits provided by genetic information without fear of consequent discrimination. Protection against such discrimination is essential for the adoption of new genetic technologies, the advancement of genetics research, and the realization of personalized medicine that improves outcomes and decreases suffering.

Electrical and electronics engineers are at the forefront of health systems engineering and health informatics. As such, they offer unique insight into the complex technical and legal paths that may allow sensitive health information to migrate beyond an individual’s intent. Like all health consumers, engineers also stand to benefit from the accelerated arrival of personalized medicine. And like all employees, they have an interest in eliminating all forms of unfair discrimination in the workplace.

Presently, employers are able to obtain unrestricted access to an individual’s health information by requiring that an applicant sign a general medical release following a conditional offer of employment. If the conditional offer is withdrawn, the individual usually has no legal right to an explanation of the reason for withdrawal.

Such an environment affords little protection against employment discrimination based on any sort of sensitive health information, particularly relating to one’s genes. The current situation discourages the public from seeking out the benefits of genetic testing and impedes the widespread adoption of genetics technologies and the advancement of genetics research.

In response, IEEE-USA supports:

1.  Restricting employers (including employment agencies acting on behalf of employers) from requiring, requesting, collecting, purchasing, or otherwise obtaining health information about an individual or the individual’s family member(s), unless the requested information is:

a. directly related to the requirements of an individual’s current or applied-for job position, or 

b. necessary to support workplace health and safety monitoring, or 

c. necessary for other health research activities for which, the employer will only receive aggregate data (not revealing the identity of individual employees).

Further, we recommend that employers must obtain voluntary written consent from employees or applicants who are requested to undergo medical tests and measurements. Prior to obtaining such written consent, the employer must provide:

i. purpose of the test or measurement; 
ii. details of the analyses to be performed; 
iii. applicable privacy policies and possible ramifications of the test results;
iv. details regarding the storage/destruction of test samples;
v. process for accessing test results and correcting errors in records; and
vi. proof of the testing program’s compliance with applicable government regulations.

2. Restricting employers from making employment-related decisions based on health information, except in cases where that information is necessary to support workplace health and safety or to demonstrate an individual’s ability to perform a specific job (e.g., meet minimum prerequisites for weight, height, and eyesight).

3. Adding safeguards against discrimination in employment decision-making where an individual’s health information may be a contributing factor. In particular, employers should be required to inform an applicant in writing of the reasons for retracting a conditional offer of employment.

4. Minimizing the economic incentives that encourage employers to obtain non-job-related health information for use in their employment decision-making (e.g., restricting or eliminating the use of such information in the determination of group health insurance rates).

This statement was developed by the IEEE-USA’s Medical Technology Policy Committee and represents the considered judgment of a group of U.S. IEEE members with expertise in the subject field. IEEE-USA is an organizational unit of The Institute of Electrical and Electronics Engineers, Inc., created in 1973 to promote the careers and public policy interests of the more than 235,000 electrical, electronics, computer and software engineers who are U.S. members of the IEEE.

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Last Updated: 21 August 2002
Staff Contact: Deborah Rudolph, d.rudolph@ieee.org

Copyright © 2002 The Institute of Electrical and Electronics Engineers, Inc.
Permission to copy granted for non-commercial uses with appropriate attribution.