Many common diseases can be inherited when a mutated gene is passed down from a parent to a child. Sickle cell anemia, Huntington’s disease, Downs Syndrome, and breast cancer are only a few examples of such conditions that can be acquired by heredity. Genetic mutations can be caused by either environmental factors (such as cigarette smoke) or by random alterations in the genes.[1] Researchers have also found evidence that certain “behavioral” disorders such as obesity, alcoholism, and mental illness may also have a genetic component.[2]

 

Advances in technology have made it possible for people to be screened for many genetic disorders, and the number of disorders that can be identified through these tests is growing rapidly. Various laboratory tests can identify whether a person will develop or have the chance of developing one of these genetic conditions during their lifetime. Many people want to take advantage of these tests so that they can engage in reproductive planning. If the individual is a carrier of a gene for a serious disease, she may choose not to reproduce or to choose her partner carefully so that the risk of passing on such a gene is minimized. In the case where a person carries a gene for a disease that results from a combination of heredity and environmental factors, she can plan to make lifestyle choices which would decrease the chance that she would develop the condition. If the individual is very likely to develop a serious condition which would require a great deal of medical treatment, the genetic information may assist him in his estate planning. For instance, if he knows that he will need full-time nursing care, he may plan his finances in a way that he can spend-down his assets to qualify for Medicaid without financially burdening his family members.

 

With all of the advantages that genetic testing offers, many are concerned that this information will be used in a way to discriminate against those who are at risk of genetic conditions. One major concern is that employers will use genetic information to discriminate against current and potential employees out of fear that the employer will bear the cost of the resulting illness or that the employee’s work will be affected. Another concern is that insurance companies will use the information to cancel, limit or deny coverage to those who are predisposed to a genetic disease.[3]

 

Currently, Congress is considering The Genetic Nondiscrimination Act of 2007 which would prohibit discrimination on the basis of genetic information with respect to health insurance and employment.[4]If passed, this legislation would amend the Employee Retirement Income Security Act of 1974 (ERISA) and the Public Health Service Act to prohibit employers and issuers of health insurance from requiring genetic testing.[5] Insurance premium enrollment determination based on genetic information would also be prohibited.[6] This prohibition would apply to both private insurers as well as issuers of Medicare supplemental policies.[7] Medical confidentiality and privacy rules would be broadened to apply to genetic information. In addition, employers would be prohibited from discriminating against individuals by denying them employment opportunities based on genetic information.[8] The legislation would also establish a Genetic Nondiscrimination Study Commission that would continually examine the state of the science of genetics and advise Congress on whether a disparate impact cause of action would be necessary.

 

While passage of the bill in both chambers looks promising, the bill does have its opponents. These opponents do not necessarily support discrimination based on genetic screening, but believe that a federal law is just not necessary. A large reason for this belief is that there have not actually been any genetic discrimination cases brought in U.S. courts, either federal or state; although the Equal Employment Opportunity Commission (EEOC) has settled a lawsuit alleging genetic discrimination.[9] However, many strongly believe that the EEOC lawsuit is a sign of things to come. Currently, genetic testing is not the norm in our society since it is an emerging technology. However, the number of genetic conditions that can be identified via testing is increasing rapidly and this advancement will most likely lead to more genetic testing in the general public. Once genetic screening achieves this status, it is nearly certain that insurance companies and employers will start to pay more attention.

 

Currently, insurance companies can discriminate on the basis of a family history questionnaire, by assessing the risk that a member could develop a hereditary disorder. The higher a person’s risk is determined to be, the higher that person’s premiums will be. In some cases, the person may be denied coverage all together. Genetic information would be valuable to an insurance company as a more concrete and thorough method of determining a person’s risk. This is a logical progression in risk analysis that will take place once genetic testing becomes more prevalent.

 

Some are also concerned that certain racial or ethnic groups could be targeted by genetic discrimination. There are several diseases that tend to be more prevalent among certain groups of people than others. For instance, sickle cell anemia primarily affects African Americans, with 1 out of every 12 African Americans carrying the sickle cell trait.[10] Another example is found in the BRCA1 and BRCA2 genetic mutations that cause breast cancer. A disproportionate number of women with these mutations that actually develop cancer are members of the Ashkenazi Jewish population.[11] For some citizens, genetic discrimination could become a covert form of racial and ethnic discrimination in the workplace.

 

The threat of discrimination does not only affect a small portion of the population. As Francis Collins, Director of the National Human Genome Research Institute, stated in his testimony to Congress, “…there are no perfect specimens at the DNA level; each one carries numerous gene variants that increase our risk of developing one disease or another. Therefore, each one of us is at risk for genetic discrimination.”[12] This knowledge is very frightening to the American public because people do not want to worry about losing or not being able to afford health insurance or being victims of workplace discrimination. Most importantly, if people are afraid of discrimination, they will not seek genetic testing, which could greatly improve the health and lives of them and their families.

 

Currently, forty-one states have laws that protect people from discrimination by insurance companies on the basis of genetic information.[13] Thirty-two states have laws protecting the public from employment discrimination based on genetic information.[14] However, these laws vary widely in their protections and are not nationwide. Some federal laws, such as the Health Insurance Portability and Accountability Act (HIPAA) and the Americans with Disabilities Act (ADA), protect against some genetic discrimination as well; however these protections are also not broad enough.[15] Current federal law does not protect citizens against many forms of genetic discrimination including:

 

·        Discrimination based on unexpressed genetic conditions

·        Requirements for potential workers to provide genetic information to their employers after a conditional offer of employment

·        Requirements to provide medical information that is job related and consistent with business necessity.

·        The refusal of an employer to offer health coverage to a person who is predisposed to a genetic condition.

 

Genetic testing holds promise that we will enter the era of personalized medicine, where each person can be treated according to his or her individual risks and conditions instead of with a “one-size-fits-all” form of medicine.[16] The deterrence of people from seeking genetic testing will only hold back the progress of medicine and the quality of life for much of society. The passage of the Genetic Information Nondiscrimination Act of 2005 is necessary to put the public’s minds at ease about being discriminated against and penalized for trying to protect their health.

 

 

For more information, see:

 

1.      The National Human Genome Research Institute at http://www.genome.gov/.

 

2.      The National Coalition for Health Professional Education in Genetics at http://www.nchpeg.org/.

 

3.      Council for Responsible Genetics at http://www.gene-watch.org/programs/privacy.html.

 

4.      Greely, Henry T., “Banning Genetic Discrimination,” New England Journal of Medicine at http://content.nejm.org/cgi/content/full/353/9/865.

 

 

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