Keeping Your Genes Private Essay

Keeping Your Genes Private Essay

Genetic testing is gradually conquering healthcare markets. With the rapid development of preventive medicine, medical professionals become more and more interested in the benefits of genetic testing. It appears that genes are responsible for many untreatable diseases, and thus genetic testing could potentially prevent thousands of deaths. In his article, Mark A. Rothstein (2008) discusses the most serious ethical and security challenges regarding genetic testing. The author writes that patients and individuals are extremely excited about the benefits of genetic testing, but many of them do not even imagine that the current system of healthcare in the U.S. cannot guarantee security and privacy of genetic test results (Rothstein, 2008).

Keeping Your Genes Private

Genetic testing is gradually conquering healthcare markets. With the rapid development of preventive medicine, medical professionals become more and more interested in the benefits of genetic testing. It appears that genes are responsible for many untreatable diseases, and thus genetic testing could potentially prevent thousands of deaths. In his article, Mark A. Rothstein (2008) discusses the most serious ethical and security challenges regarding genetic testing. The author writes that patients and individuals are extremely excited about the benefits of genetic testing, but many of them do not even imagine that the current system of healthcare in the U.S. cannot guarantee security and privacy of genetic test results (Rothstein, 2008). “Figuring out how best to secure genetic privacy would be simpler if genetic information and genetic conditions were easy concepts to define. But they are not. Medical investigators are finding that almost all illnesses have a genetic component” (Rothstein, 2008). That is why professionals in medicine develop genome-wide testing procedures to make sure, that patients and individuals have full information about their health. Unfortunately, it is too early to use this type of genetic testing routinely. Many laboratories do not even have a license, and thus are not responsible for possible security failures, as well as for the quality of genetic testing results (Rothstein, 2008).

The current security issues are due to the growing use of digital data. The more digitalized medicine becomes, the more difficult it is to protect private information from misuse. Earlier, in paper-based systems of medicine, it was easy for a person to “lose” some of his (her) negative medical records. In this way, people could protect their sensitive information from disclosure. Now, when healthcare providers use digital information, it is more and more difficult for a person to conceal sensitive information. Moreover, current digital systems use longitudinal records from numerous health providers, and although a dentist does not need to know that a person has breast cancer risks, this information can be readily accessed by anyone (Rothstein, 2008). Other developed countries have already adopted new security systems, which promote selective access to healthcare information. Such systems are absent in the U.S., and there is still no balance between broad and narrow disclosure. Technology specialists cannot know what information, and in what instances physicians may need to meet the healthcare needs of patients. That is why security remains one of the primary genetic testing concerns.

While developed countries actively work to protect private genetic information from disclosure, the U.S. is still at the very beginning of the road. Rothstein (2008) states that “the closest thing to a national safeguard is the 1996 Health Insurance Portability and Accountability Act and the 2003 Privacy Rule attached to it”. Unfortunately, Privacy Rule covers only entities that use digital information and cannot make other organizations responsible for misusing this genetic data. At the same time, Europe actively moves to better genetic testing legislation. The new legislation in Germany “rules out genetic discrimination, banning the use of test data by employers and insurance companies (although the ban for insurers is not absolute)” (Anonymous, 2009). European countries have been more attentive toward the benefits of genetic testing, and such laws only confirm their desire to promote genetic testing along with preventive medicine. In the absence of federal laws, states have adopted local regulations concerning genetic testing, which require written or oral expressed consent to disclose test results (Rothstein, 2008). But these laws do not allow employers and insurance companies to use genetic information for their own purposes (for example, to change the structure of healthcare benefits). Unless the U.S. develops effective measures of protection, individuals will hardly have a chance to prevent their diseases in timely manner. Healthcare will further suffer security issues, without any chance to improve the system of medical services at the local and federal level.

References

Anonymous. (2009). Genetic privacy and piracy (editorial). Nature Cell Biology, 11: 509.

Rothstein, M.A. (2008). Keeping your genes private. Scientific American. Retrieved June 26,

2009 from http://www.mcdb.ucla.edu/Research/Goldberg/HC70A_W09/pdf/keepyourgenesprivate.pdf

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