GENETIC TESTING AND ANALYSIS
Ethical, Legal, and Social Issues
While genetic testing is revolutionizing health care, many have raised concerns over confidentiality, discrimination, and morals. One of the greatest fears of the public of genetic testing are employers and health insurance companies who may discriminate against those who have or will develop genetic diseases.
One of the earliest forms of genetic discrimination is demonstrated by the famous supreme court case Buck vs Bell. The Supreme Court ruled that Carrie Buck and her daughter were “feebleminded” which in turn enacted eugenic sterilization laws. Before the Health Insurance Portability and Accountability Act (HIPAA) was enacted in 1996, insurance companies could legally refuse to pay medical fees for clients who had or were susceptible to a genetic condition. In 1995, the Equal Employment Opportunity Commission banned discrimination in the workplace. Despite the policies to combat genetic discrimination, the fear still lives in the public.
The United States Department of Labor states, “Sixty-three percent of the participants in a 1997 national telephone survey(5) of more than 1000 people reported that they would not take genetic tests for diseases if health insurers or employers could get access to the results. Eighty-five percent felt that employers should be prohibited from obtaining information about an individual's genetic conditions, risks, and predispositions.” Employers can perform genetic screening and monitoring on their employees or potential employees. In order to prevent paying additional costs for sick leave, health coverage, and benefits, employers would only hire healthy individuals with low chances of developing genetic diseases. For example, African Americans with sickle cell disease were often denied a job due to their condition. Other times, genetic diseases are linked to a particular ethnic or racial group. Currently laws such as Title I and the Rehabilitation Act of 1973 protect people with disabilities that includes some genetic disabilities.
Another concern among the public is privacy. Those who choose to take a genetic test could endanger the privacy of their family members. An individual who tested positive for a severe genetic disorder now has to decide whether or not to inform his or her family members of this condition. Since taking a genetic test is a personal choice, some family members may not want to know their chances of developing a genetic disorder. Some may want to know ahead of time to plan their lives accordingly while others rather not sacrifice their happiness and live in ignorance. Releasing personal information is a difficult and complex decision for an individual. The physician also faces a predicament. A physician is required to keep a patient’s medical information confidential, however, also has the duty to offer some kind of treatment, advice, support, or counseling for those who face something a serious as a genetic disease.
For prospective parents, genetic tests such as prenatal testing or carrier testing can be a difficult decision. Depending on the individual, societal beliefs, religion, and values play a large role in choosing to continue or terminate a pregnancy.
For forensic testing, some fear that the forensic DNA database is a violation of privacy. DNA fingerprinting is a form of identification that some fear may be abused. In the UK in 2012, the UK Protection of Freedoms Bill was introduced to address the concern. The bill resulted in the deletion of 1,766,000 DNA profiles and 1,672,000 fingerprint records deleted form the UK database (1). Today, more than 60 countries use genetic databases. Misuse of genetic information may become more common as countries begin to share genetic data.
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In 2008, Genetic Information Nondiscrimination Act of 2008 (GINA) was enacted in the United States. Title I of GINA prohibits health insurance companies from discriminating against clients and Title II of GINA prevents employers from discriminating against workers.
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