Genetic discrimination — an overblown fear?

The fear of insurance companies or employers using genetic information to discriminate against individuals is an important concern for geneticists to be aware of as such fear could hamper their studies by preventing individuals from participating in research. But just how real is this fear?

Although there is much talk of “genetic discrimination”, so far there is little evidence of its extent. Most reports are anecdotal collections of cases (Billings et al.) or are based on surveys with low (<10%) response rates (Geller et al. 1996). In one survey (which avoided the word discrimination), US genetics professionals reported 693 cases of patients or family members who had been refused life insurance or employment on the basis of carrier status or genetic predisposition in the absence of symptoms (Wertz 1999). However, refusals were rare relative to overall patient volume in this study, in which 1,084 geneticists with ∼9 years experience each saw an average of six patients a week, making a total of ∼2,900,000 patients in all. In a separate survey, 476 patients at 12 North American genetics clinics reported 43 instances of refusals of insurance or employment because of genetic disability or disease (including relatives). But their descriptions indicated that many believed that a wide range of common conditions were inherited. For example, patients reported being denied a job as a firefighter because of chronic bronchitis and being denied disability insurance because of obesity (in the absence of a known genetic syndrome). Most patient reports fell within the vagaries of insurance practice generally, including being refused cosmetic surgery for Down syndrome because the company did not cover cosmetic surgery or procedures, such as late abortions, that were only available outside the individual's home state.

Perhaps such fears mirror a more general “genetic dread” that pervades society. Will refusals of insurance or employment increase in the future, as more people take genetic tests? Probably not. In the past, some refusals were caused by ignorance. As insurance companies learn more about genetic disorders, illogical refusals, such as refusing life insurance to sickle cell carriers, will decrease. However, refusals based on sound actuarial evidence can still be unethical (Rothstein & Anderlik 2001). For example, individuals with cystic fibrosis require more health care and die earlier than others. But it would be unethical to deny health-care coverage to them or to prevent them from purchasing a house in countries where mortgages require life insurance. This is where social justice and community obligation to protect the vulnerable come into play. Laws that protect rights to employment for people with disabling symptoms (such as the Americans with Disabilities Act) should be extended to preclude discrimination on the basis of carrier status or predisposition in the absence of symptoms. Only system-wide safeguards can solve the problem, such as government-sponsored health-insurance systems and guarantees of a basic amount of life insurance in nations (including much of Europe) that require it to secure home mortgages.