The Dilemma of Genetic Testing

"In the distant past, man has looked to the stars for his destiny; in the future, he will look at his genes." Genetic technology holds great promise for the future, but with it, it raises complex moral and ethical issues that demand our immediate attention. One of the most recent advances in genetic technology is genetic testing, or our ability to look at our own genes and assess our risk of contracting a whole array of diseases, such as cancer and Alzheimer’s. Genetic testing should definitely be employed, because it allows us to practise preventive medicine, but with the strictest of controls on privacy, as not doing so might constitute a violation of privacy and raise the spectre of discrimination.

If genetic testing is made available, there is a danger that that information might leak out, and constitute a violation of privacy of the person concerned. Privacy rights have been extensively enforced in the public sector, but with the emergence of private companies offering genetic testing, protections against privacy infringements might become woefully inadequate. For example, the Fourth Amendment right in the U.S Constitution and the right to informational privacy as established in the Supreme Court ruling of Whalen v. Roe do not apply to the private sector. The U.S National Research Council also warned that the medical records of millions of people were open to exploitation. Privacy is a fundamental right, and since genetic testing reveals some of the most intimate secrets about our future health, this right should never be compromised.

Together with a violation of their privacy, people might also face discrimination in the marketplace if genetic testing is made available. Insurance providers and employers have to shoulder the costs that occur because of the treatments that their policyholders and employees, respectively, receive. It is thus in their best interests to hire people who have a very low risk of contracting diseases which might be expensive to treat. Because of this, people who are in the high risk group face certain discrimination when applying for jobs and insurance cover. The possibility of genetic discrimination happening is so great that the American legislature passed the Genetic Information Nondiscrimination Act in 2005, which forbids employers from factoring genetic information into their hiring decisions. An Australian study, called the Genetic Discrimination Project found that approximately 10% of the 1000 people it tracked experienced some form of discrimination, with 14 people being denied insurance cover. The Australian study and the American legislation show that discrimination on the basis of genetics is a very real possibility.

However, we cannot dismiss genetic testing straightaway because it can lead to individualized patient care and preventive medicine. Genetic testing is only an assessment of risk based on genetics, and there are a variety of other factors such as the environment and our lifestyle that affect our chances of contracting an illness. The meaning of this is that if we know what kind of diseases we might fall prey to, we can make changes, such as adopting a healthy lifestyle, to reduce our risk of contracting those diseases. Tom Miller, the Director of Health Policy Studies at the Cato Institute, said that genetic testing "holds great promise in fine-tuning health care treatment" and that it "might help individuals take preventive measures to reduce the consequences of disease". When patients know what kind of illnesses they are susceptible to, they can do what is necessary to reduce the risk of developing that disease, and thus improve their quality of life.

Genetic testing increases the probability of privacy violation and discrimination, but these risks are heightened only if there are no or weak mechanisms in place that protect the sensitive and personal information created by genetic testing. However, to ignore the massive potential that genetic testing has for the health of the future populace would be equal to committing a crime against humanity. Therefore, to derive the full benefits of genetic testing, there should be strong laws regulating the use of and access to genetic data. The genetic testing debate shows that science does not exist in a moral, legal or ethical vacuum, and that these issues are almost always more important than the scientific advancements themselves.