Genomics - Ethical, legal, and social implications (ELSI): Nursing

Nurse Mateo is meeting with Ms. Sullivan today at the women’s health clinic. “I’m very concerned about my risk of developing breast cancer,” says Ms. Sullivan. Nurse Mateo replies, “Can you tell me more about the reason for your concern?” Ms. Sullivan answers, “Well, my mother was diagnosed with breast cancer when she was 50 years old. Is there anything I can do aside from mammograms to assess my personal risk?” “There is a genetic screening, called BRCA screening that can help evaluate your risk. We can discuss some testing considerations,” replies Nurse Matteo. To better understand the impact of genetic screening, let’s take a look at the ethical, legal, and social implications of genetic testing.

Genomics is the branch of science that examines all of a person’s genes, including how the genes interact with one another and with the person’s environment. Genomics can help predict disease progression or the future development of disease, like how a BRCA screening can help predict Ms. Sullivan’s risk of developing breast cancer. This means that nurses have the opportunity to provide client education, and to reduce risk and improve outcomes with a more client-centered approach. While the introduction of genetic screening has had many positive impacts, it has also introduced new ethical, legal, and social implications.

Now, one of the most significant ethical implications of genomics is confidentiality and the right to privacy concerning a client’s unique genetic information. This means that the results about a genetic test cannot be shared without the client’s explicit permission. This can be an ethically complex issue if there are family members who may benefit from knowing the outcome of certain genetic screening tests, but the client chooses not to disclose the results.

As the nurse, you should educate your client about the possible risks and benefits of their options, including the option to disclose their test results or to keep them confidential. Most importantly, you are required to safeguard the client's privacy which includes protecting the confidentiality of their medical records.

Next, there is the right to know, which means clients have the right to know they are being genetically screened. Genetic testing should not be ordered without written client consent. The client is also entitled to the disclosure of all findings of genetic testing, including results that were not being directly tested for but coincidentally discovered.

Alright, so there are a few legal implications to consider regarding genetic screening. First, the Genetic Information Nondiscrimination Act, or GINA, was developed to address legal concerns related to genetic screening. In the United States, GINA makes it illegal for employers or health insurance companies to discriminate against a person because of their genetic information, including using this information to identify pre-existing conditions or to set insurance premium rates. On the other hand, GINA does not protect a client from discrimination from companies that provide life, disability, or long-term care insurance.