Ethical Legal and Social Issues

Privacy and Confidentiality   

 Should Genetic Information be available to insurers, employers, courts, schools, adoption agencies, the military and others? 

Providing genetic information on individuals can pose some potential problems with privacy and fairness. The question of who should have access to one's personal genetic information, should it even be available, and how it should be used, is very controversial. Without any legal restrictions or laws, insurance companies could hypothetically use genetic information to deny, limit, or increase medical costs for individuals whose genetic makeup shows them to be predisposed to certain disease. Even if an individual's genetic code labels them as more susceptible to a certain disease, they may never actually get sick in their lifetime. But having genetic information available creates the fear of employers using medical information to avoid hiring workers with a certain gene makeup because of the chance they might get sick and take sick leave, resign, or retire early, file for workers' compensation, or use healthcare benefits excessively, creating extra costs for the employer. Because of the potential for discrimination and increase of genetic information becoming more readily available, many lawmakers, scientists, and health advocacy groups believed that there was a need for federal legislation. (22)  

The Genetic Information Nondiscrimination Act (GINA) was signed by President Bush on May 21st 2008. (20) The law prohibits U.S. employers and insurance companies from discriminating individuals based on information derived from genetic tests. Insurance companies are forbidden from discriminating through pricing or reduced coverage, and employers are prohibited from making employment decisions based on an individual's genetic code. Also GINA does not allow insurers or employers to request or demand a genetic test.  

Previous to GINA, other legal actions were taken to prevent genetic discrimination. In 1996, the Health Insurance Portability and Accountability Act (HIPAA) was passed. This law applies to employer-based and commercially issued group health insurance only, and prohibits group health plans from using any sort of health status information, including genetic information, as a basis for denying coverage or charging extra. On Feb. 8 2000, President Clinton signed an executive order, prohibiting all federal departments and agencies from using genetic information in any hiring of promotion action. Under the order, employers were also not allowed to require genetic tests, and strong privacy protections were provided to any genetic information used for medical treatment and research. (21) In 2001, an American Management Association study showed that two-thirds of major U.S. companies require medical exams of new hires. (20) In addition, 10% of companies collect information about family medical history. Statistics demonstrate the percent of companies that conduct other medical tests: 14%- susceptibility to workplace hazards, 3%- breast and colon cancer, 1%-sickle cell anemia.

                                                                        Who owns and controls genetic information? 

When genetic information is derived, there is always the question on who has the rights to the data. Is it the individual, the company the sequenced the DNA, the health care providers of the hospitals? A lot of the time, private companies who sequence DNA, such as 23 and Me, ask to anonymously use the data collected. (23) The HIPAA privacy rule provides federal protection for personal medical records and health information. It's balanced to give patients rights, and also permits the disclosure of personal health information needed or patient care and other important reasons. The security rule specifies safeguards to assure the confidentiality and availability of electronic protected health information. (24)

Phycological Impact

Would you want to know your genetic information and predispositions? 

There is some controversy over the idea of knowing every single gene in one's body, and the diseases they are likely to have. Although, having a gene variant may not necessarily mean that the particular trait will develop. There are many factors that control whether a gene is expressed or not. At times it may be beneficial to know your genetic information because you can take a lot of preventative measures. For example, a person may have a gene variant that is known for increasing the risk of developing emphysema from smoking. If that person never smokes, the emphysema will not develop.(25) However the idea of obtaining such in-depth information about a person, and what may possibly lay ahead in their future, is uncomfortable for some people. Knowing personal genetic information may affect an individual, or society's perception of that individual. There are also the philosophical implications regarding nature versus nurture, human responsibility, free will versus genetic determinism, and concepts of health and disease.  

The idea of genetic enhancement and "designer babies", though futuristic, makes the public wary. Behavioral genetics research has suggested specific genes that code for certain behavioral traits, such as "smartness". Though there is no single gene that determines a specific behavior, the media reports can often be misleading to the public claiming breakthroughs in gene function. (25) An example includes a 1999 study, claiming an over-expression of a particular gene in mice led to increased learning ability. This began to be known as the "smart gene" and the press made many claims, however in reality the learning enhancements observed in the study were very short term. (25) Identifying genes for traits such as intelligence, homosexuality, or criminality could have a lot of effects on society. Finding a gene which increased criminal activity may have effects on our legal system, and finding a homosexuality gene could increase or decrease tolerance. The Online Mendelian Inheritance in Man (OMIM) is an large accessible database of human genes, genetic traits, and disorders. All the records contain references and summaries of the scientific literature describing what is known about the particular gene/trait/disorder. (26)


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