Is it ethical to require individuals to submit to genetic testing prior to employment (consider the pros and cons)? Should individuals be allowed to refuse testing?

Ultimately, the decision should be up to the individual in question on if they want their genetic materials tested, but it should be clearly communicated between the employer or authority what the intended use of the information will be used for. One of the positives of genetic testing is that it can be utilized to determine certain susceptibility to certain diseases or conditions. Specifically, it was shown that approximately 62% of healthcare workers in the Netherlands would be more than happy to submit their genetic information to know their personal risks at work to possible eczema exposure from patients (Visser et al., 2013). Even though 62% is a majority 38% is a significant minority that would not want their genetic information tested. While they should have the right to deny genetic testing, they should be clearly informed on how it can benefit not only themselves but also protect other patients in the event of exposure and subsequent infection.

A con as to why genetic testing can be a negative to the employee-employer relationship stems from the issue of personal privacy. Providing your genetic information to an employer provides a unique biological identifier that can indicate certain predispositions (Clayton, 2019). This can lead to possible discrimination of employment based on health that can be hard to prove as an indicator as to the "why" the employee was not hired on. Even while GINA (Genetic Information Nondiscrimination Act) acts as a shield to prevent this from occurring, a secondary reason for not being brought onto a program can easily be indicated, i.e., lack of qualifications, not aligning to a company's values, more qualified candidates, etc. Additionally, having genetic information on file can be a security risk for individuals who want to retain their privacy and personal data to as few sources as possible (Visser et al., 2013).

 

 

Student 2:

Discuss the purpose of GINA and HIPAA, including historical perspectives related to their purpose. With current technological advancements do these laws provide adequate protection?

It's 1995 in Congress and democratic representative Louise Slaughter from New York along with her colleague Republican representative Olympia Snowe from Maine introduce legislation that would prevent genetic discrimination known as GINA. GINA aims to protect people's genetic information obtained from genetic tests including their family genetic history. By doing so, these legal protections reassure a person that genetic testing is safe. The legislation received bipartisan support from both the Senate where it passed with 95-0 and the House where it passed with 414-1. It was hailed as the "first civil rights bill of the new century of the life science" by Senator Ted Kennedy. Though the bill was introduced in 1995, due to criticism from insurance, and other stakeholders it took 13 years for it to become law. George W. Bush junior signed GINA and made it a law on May 21, 2008 (Suter,2018).

The law was widely seen as a monumental achievement at the time and is regarded as a first step in protecting people's genetic information. GINA has limitations because it does not protect an individual's rights to refuse different tests that may reveal their susceptibility to a disease. GINA does not include protections outside of employment and health insurance. For example, a company may have a wellness program and offer genetic testing to its employees and the consequences of not participating may be high (Zhang, 2017). Additionally, Innovation in genetic engineering has brought about new technology that has changed how genetic information is studied requiring an update to GINA. Like GINA, HIPAA sought to protect individuals' health information. The Health Insurance Portability and Accountability Act (HIPAA) was first introduced in Congress as the Kennedy-Kassebaum Bill in 1994. Though its progression through Congress was stalled by different stakeholders and members of Congress it was signed into law on August 21, 1996, by President Bill Clinton. The bill aimed to improve the transmission of personal health information by establishing federal standards. It also protects each person's personal medical information from unauthorized access and use. Today a person's personally identifiable information can be collected using various methods and a profile can be built using it. This data can then be used to determine if a person has a disease/illness. For example, a person may go to Walmart to buy medication and do this regularly data may be collected via cookies by Walmart or third-party actors and be used to determine the person's health. Therefore, HIPAA needs to be updated to reflect changes in the collection, transmission, and handling of a person's medical information.

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Requiring individuals to undergo genetic testing for employment raises ethical concerns On the pro side it could potentially identify predispositions ... View the full answer