How Gene Testing Is Impacting Discrimination

by Dr Jonathan D'Souza

We have unprecedented access to information about our bodies and our genome. While this information helps us live healthier lives, the distinction between "atypical" and "normal" has become more cloudy. With this revolutionary data about the inner workings of the human body, we are dared to live peacefully and to not discriminate against one another.

The story of fifteen-year-old Colman Chadam is an illustration of this modern phenomenon. During Chadam's routine health exam in Palo Alto, California, doctors discovered that the boy was carrying genetic markers of cystic fibrosis, which is a genetic disorder the negatively impacts the lungs.

He did not actually have the cystic fibrosis, but he was asked to leave his school to protect other children's wellbeing by the school's administration. The incident preempted a law suit between the parents and the school district. Eventually, Chadam was allowed to return to the school, but the incident incites an interesting societal question: how should officials differentiate between carriers of a disease and carriers of the genes of a disease?

There is a difference between a person who is a "carrier" (meaning, he has one copy of a defective cystic fibrosis gene) and a person who actually has cystic fibrosis. Cystic fibrosis is a genetic disease in which a person has two defective genes that are inherited from each parent. Colman is a carrier and so he does not have the disease. This case of Colman sparks the debate on genetic discrimination and the right to privacy. Did the school have the right to know about his condition in the first place? 

With the increasing access to DNA testing technology, claims of genetic discrimination are likely to become more common. Cheaper at-home test kits are gaining popularity and are advertised as a way to discover your medical and ethnic background. What if you discover information that is scary? Should you tell your friends and family? 

Michelle Lewis, a research scholar at the Johns Hopkins Berman Institute of Bioethics told Wired, “As we do more screenings earlier and earlier in life, there’s potential for misuse of information in ways that are harmful, that could potentially discourage parents from seeking genetic testing even if it’s medically indicated.”

While we may not be able to answer these questions today, we can offer tips on how to live in harmony with one another - regardless of your condition. If you have a lung infection, read the tips below to learn how to protect those around you.

1. Keep Your Hands Clean
Clean your hands especially after sneezing, coughing, and chest physiotherapy. Do so before and after your doctor's visit. Wash your hands with soap and water or an alcohol-based hand gel.

2. Correctly Cover Your Mouth And Nose When You Cough 
Use a tissue whenever you cough or sneeze, throw the tissue away after use, then clean your hands. If a tissue isn't available, cough or sneeze into your inner elbow or upper sleeve, not into your hands.

3. Take Your Vaccines
Take the vaccines that are recommended by the Centers for Disease Control and Prevention (CDC). Annual influenza vaccine is essential for people with cystic fibrosis and their families.

What are your experiences with genetic discrimination? Share your experiences below.

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