Protecting Genetic Privacy by Permitting Employer Access Only to Job-Related Employee Medical Information: Analysis of a Unique Minnesota Law
Rothstein, Mark A., Gelb, Betsy D., Craig, Steven G., American Journal of Law & Medicine
Mark A. Rothsteint^, Betsy D. Gelb^^, Steven G. Craig^^^^
One of the most frequently expressed concerns about new scientific discoveries resulting from the Human Genome Project is the potential for genetic discrimination in insurance and employment. The issue of discrimination in insurance, primarily health insurance, has justifiably received widespread attention in the scholarly literature. Among other research, there has been a special task force on insurance of the Joint Working Group on Ethical, Legal, and Social Implications of the Human Genome Project,l a special committee report of the National Action Plan on Breast Cancer,2 a special report of the American Council of Life Insurance and the Health Insurance Association of Americas and numerous reports and scholarly articles.4
The ethical, legal and social implications of genetic discrimination in employment, although widely recognized as being very important, have received somewhat less attention than genetic discrimination in health insurance.5 Undoubtedly, much of the concern about genetic discrimination in employment arises from the relationship between employment and group health insurance.6 However, there are other problems. The disclosure of sensitive genetic information may result in invasions of privacy and breaches of confidentiality in obtaining the information and the loss of employment means denial of the opportunity to earn a livelihood for individuals determined to be at genetic risk.7 As a result, many at-risk individuals forego genetic testing because they fear these consequences.8
Recent legislative enactments at the state level have not resolved the problem and neither will current proposals in Congress. The current approach to the issue of genetic discrimination in employment is to prohibit employers from conducting their own genetic tests, using the results of genetic tests or engaging in genetic discrimination.9 Nevertheless, proposed legislation will not, and enacted genetic legislation does not, alter the current law under which employers may require prospective employees to sign a release authorizing disclosure of all of their medical records to the employers. Consequently, employers may routinely obtain genetic information from personal medical files and could potentially engage in surreptitious discrimination. Moreover, the fear of having to disclose genetic information to employers discourages many at-risk individuals from undergoing testing in the clinical setting.
This Article contemplates a different approach to the problem of employer access to and use of genetic information. Instead of advocating for another law prohibiting genetic discrimination in employment, arguably already prohibited by the Americans with Disabilities Act (ADA), this Article analyzes a Minnesota statute that prohibits employers from performing any tests or gaining access to any medical information that is not job-related. The statute's approach avoids the two main problems of current laws and proposals: (1) defining what is "genetic" and (2) preventing employer access to medical records containing genetic information.
Since enactment in 1983, Minnesota is the only state with a statute that limits an employer's access to an employee's non-job-related medical information.10 This Article reviews the legislative history of the Minnesota law and attempts to determine what effects, if any, it has had. We conclude that although available data cannot accurately evaluate the Minnesota experience, its legislative approach still represents a better alternative to current proposals.
II. GENETIC INFORMATION AND EMPLOYMENT
A. GENERAL CONSIDERATIONS
It is important to understand why employers want to obtain diagnostic and predictive medical information about employees and prospective employees. Employers are concerned about their employees' fitness to work. Individuals who are unable to work because of physical or mental impairments cause an increase in absenteeism and turnover, higher accident and workers' compensation rates, decreased productivity and related problems. …