DIS2

I don't believe we need to debate the general principle that an individual's health related information should be protected from unauthorized disclosure. So this week, we're not debating the ethics question "should there be a right to privacy of healthcare information?", we will assume there should be.

Since most of us will be working in healthcare, we need to recognize that such a right to privacy for our patients places ethical, as well as legal, requirements on us. So first, let's take a look at how the federal government, through the Health and Human Services Department (HHS), protects patient privacy by administering a law called the Health Insurance Portability and Accountability Act of 1996 (HIPAA). 

Visit HHS at  https://www.hhs.gov/hipaa/for-individuals/guidance-materials-for-consumers/index.html . Click on the video. That will start a series of short videos that will follow automatically, lasting about 20 minutes in total. This will provide a good overview of HIPAA.

Read the article "Boston Hospitals Fined".

When HIPAA was enacted in 1996, we didn't know very much about mapping an individual's genetic code and using it to identify genetically determined health risks. Now, because of the success of the Human Genome Project and the research that it has made possible, we can predict many risk factors and the future will make many others predictable as well. HIPAA didn't address the privacy of genome profiles per se.

And here we have an ethical discussion to explore. Research the web and learn about the Human Genome Project.

Here are some questions for you to address in this essay’s:

If an individual's genome indicates a high risk of developing a significant disorder, like heart disease or diabetes mellitus…

…should that information be available to the government, potential employers, insurance companies or others so those entities can take it into account in hiring or premium rating decisions?

…should there be a HIPAA-like law for genomic information?

…can you think of a situation where it would be ethical to disclose health information (genetic or arising from a clinical relationship) without the patient's consent?