Personal Genomics 101

Ethical Issues

People cite fear of losing insurance as a major reason to avoid genetic testing. Others argue that discrimination by insurance companies is not a problem, often pointing out that few of these cases, which are difficult for employees to win, have been filed. Insurers assert that they do not perform tests to obtain genetic information but argue that they should be free to use such information if it is available, citing the need to avoid “moral hazard” — the risk that people who know they will become ill or die soon will try to obtain insurance at regular rates. (nejm.org)

Genetic Discrimination is discriminating on the information that is taken from an individual's genome.

Legal Issues 

Both federal and state governments have been actively engaged in discussions about who ought to have access to health information and under what conditions. This debate is informed appropriately by the recognition that limiting access to the medical record to the patient and the treating clinician is neither possible nor unequivocally desirable. (nejm.org)

"Congress specifically banned certain uses of genetic information in determining insurance eligibility, but it placed no limits on rate setting" (nejm.com).

A bill which was passed by the House of Representatives last year and is yet to reach the Senate, the Genetic Information Nondiscrimination Act, would prohibit insurers from denying benefits or raising premiums as a results of genetic information, and it would probit employers from collecting or making use of genetic information for hiring, firing or compensation decisions. (medicalnewstoday.com)

Social Issues 

The most commonly expressed fear is that genetic information will be used in ways that could harm people — for example, to deny them access to health insurance, employment, education, and even loans. Part of that concern is fueled by the growing recognition that health information is not entirely private, despite people's expectations and desires to the contrary. (nejm.org)

Some people tend to be afraid of getting their genomes tested, for the facts that your genes tell your future, and those genes cannot be changed.

Genomic Testing shows many possible diseases that you could get in the near or distant future, and knowing that can scare some people. People sometimes take action and try to prevent these by stopping their everyday life completely. They will stop participating in normal activities that they had been doing before the testing, to try and stay in a bubble so they won't get sick.  

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