Genome Sequencing

[ May 23, 2014 ]

In response to recent advances in genome sequencing, over 700,000 Americans have had their genomes sequenced. This technology allows people who have or will later develop life-threatening illnesses to receive the best treatment possible. Many people remain skeptical of this test even though it provides a multitude of health benefits and is increasingly affordable.

Despite advances in technology and decreases in the cost, many are still hesitant to have their genome sequenced. This reluctance stems from an omission in the Genetic Information Nondiscrimination Act (GINA), a law created in 2008 that protects individuals’ right to conceal genetic information from employers and health insurers. The law omitted the right to confidentiality from life, disability, and long-term healthcare providers. This is an omission that has particularly deleterious effects on those who have serious illnesses and can benefit from having this test done.

Many individuals who are at a greater risk for inherited diseases are fearful that if the genome sequencing reveals their predisposition to illness, insurers will make them pay premiums or deny their insurance all together. Because this advancement in technology is fairly recent and many people who fear backlash from insurance providers resist having their genome sequenced, the number of individuals in the population who carry these inherited risks and diseases remains unknown.

Fear of discrimination by insurance providers also affects research programs. For example, a neurological study of Huntington’s disease was cancelled because many of the test subjects were worried that their tests would be, by law, sent to insurance providers. While some states keep the healthcare information of their constituents confidential from life, disability, and long term healthcare providers, most do not. Hopefully, if enough individuals have their genome sequenced, healthcare providers will be obligated to offer insurance to those with or predisposed to a serious disease. Until this happens, doctors are advocating for a confidential, separate file on patients who have received their genomic information.

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