Erroneous Thinking Behind Genetic Discrimination

Newspaper Opinion Editorial

With advances in genetic studies, Canadians can learn if they are at risk of developing devastating diseases -- and so can their insurance companies. Genetic discrimination is growing as an increasing number of people are opting for genetic tests, including people at risk of developing Huntington's disease, a degenerative brain disorder that cannot presently be cured or slowed. Children of parents with Huntington's disease have a 50% chance of developing the disorder, and genetic testing can narrow the probability ratio even further.

Genetic discrimination is unfair and the result of faulty, speculative thinking. Genetic discrimination is misleading also misleading as it is based on probability prediction, which can be absolutely incorrect. Genetic discrimination is defined as "the differential treatment of asymptomatic individuals or their relatives on the basis of their real or assumed genetic characteristics. Consider that for many individuals whose parents do have Huntington's disease, only 50% will develop the disorder. The other 50% are no more likely to develop the disease than anyone else in the general population, yet this group of people frequently suffers from discrimination that has no actual basis in their physiology.

A recent study by the University of British Columbia surveyed 167 people who are at risk of developing Huntington's disease, and had been tested for the mutation, and 66 people who were at risk but had decided not to undergo the genetic test. Of those people who participated in genetic testing, 83 had the genetic mutation and 84 did not. Forty percent of the survey respondents reporting having experienced discrimination even though they had no symptoms, and these individual said that the basis for this unfair treatment was because of family history of Huntington's disease, not genetic testing.

A number of the individuals with the genetic mutation experienced discrimination in insurance settings, and with their family regarding relationships and their choices to have children of their own. Of this group, 29. 2% experienced discrimination in their efforts to obtain life insurance, mortgage insurance, and disability insurance. Discrimination came from both insurance companies and agents in the form of premium increases, outright rejection of applications for insurance, and requests to undergo a predictive test. To a lesser degree, people at risk of developing Huntington's disease experienced discrimination in employment, healthcare, or public services such as adoption or the courts.

How do insurance companies and employers gain access to genetic information from applicants and candidates? They simply ask for it. As of this writing, current insurance law permits insurance companies to require and use health information -- and to use it without transparency -- to manage the company's risk. Insurance companies can ask applicants to divulge their medical and health information -- including family history and genetic testing information -- and give consent to have the information they provide verified. The insurance company is permitted to nullify and void any policy prepared for or issued to someone who will not agree to have their information verified.

In order to protect against unfair discrimination based on genetically determined risk for disease, the privacy of genetic information and genetic testing must be adequately protected. Digitized medical and research records may be made available to insurance companies, employers, and others. Regardless, strategies must be put in place and regulations must be enacted that restrict and forbid the use of genetic information for purposes of enrollment in insurance, rate-setting in insurance, and selection for employment. The scope of genetic information that must be protected includes that gathered through interviews and evaluation -- such as the family histories of individuals and others in their family -- and the results of actual genetic testing. Recognition that it is difficult to maintain confidentiality with respect to medical, healthcare, and other personal data, does not liberate clinicians and medical practitioners from taking every precaution necessary to safeguard genetic information.

Fundamental fallout from genetic discrimination is that associated fears can prevent genetic information to be used in positive ways. Fear of disclosure and discrimination prevents many people from participating in genetic studies and genetic research. In order for the field to move forward -- for more diseases to be understood and treated -- genetic information must be shared with research scientists and physicians. When people have access to genetic testing and benefit from genetic research, they are better able to plan their lives, obtain any indicated or necessary treatment. Genetic testing enables individuals to act proactively with respect to their career, health, procreation, relationships, and other life or life stage decisions.