Two years ago we wouldn’t have believed it — the U.S. Congress is considering broad privacy and data protection legislation in 2019. There is some bipartisan support and a strong possibility that legislation will be passed. Two recent articles in The Washington Post and AP News will help you get up to speed.
Federal privacy legislation would have a huge impact on all healthcare stakeholders, including patients. Here’s an overview of the ground we’ll cover in this post:
Six Key Issues for Healthcare
We are aware of at least 5 proposed Congressional bills and 16 Privacy Frameworks/Principles. These are listed in the Appendix below; please feel free to update these lists in your comments. In this post we’ll focus on providing background and describing issues. In a future post we will compare and contrast specific legislative proposals.
Like many of you, I have been reading the various news stories about Lance Armstrong, especially one this past weekend in a major newspaper, which went into great detail about the allegations surrounding Lance Armstrong’s cycling career.
But what I didn’t see in all of that coverage was much mention of the other side of the man, the side that I witnessed up close and personal one Friday in Texas a couple of years ago, the side that has led me to share my thoughts with you today.
I saw something that day that I had never-let me repeat, never-seen before. It was a moment that has forever influenced my opinion of Mr. Armstrong, even as these various charges have swirled about him these past couple of years. And the impression it created was indelible.
I am not here to hash/rehash the incriminations. I am here to stand up and say that no matter what the truth is regarding the allegations, this is a man who has forever changed the cancer landscape for millions of people in this country and around the world.
Three recent developments have highlighted how difficult it is to predict when and if disruptive technologies will transform clinical medicine in the United States. That we are undergoing an avalanche of new information and new technology is hardly newsworthy. From the dawn of civilization to 2003, human beings created 1 billion gigabytes of new information. In 2012, Google says they catalog 2 billion gigabytes of information every two days.
One of the confounding factors on how this new knowledge and technology is adopted by an industry like health care is the law. Henry Perritt, Jr. describes two ways to think about the relationship between the law and technology. Technological change is “a major source of human problems that the law must address.” The law also always lags technology because the common law tradition requires “that the legal system should not predetermine the course of technological application and product development.” http://jolt.law.harvard.edu/articles/pdf/v10/10HarvJLTech689.pdf
The first example of this concept of the law lagging technology involves American citizen Ellie Lavi who underwent in vitro fertilization and the subsequent birth of twins in Israel. When she went to the American Embassy, she was told that her children would not be American citizens unless she could prove that either the egg or sperm used in her case came from an American citizen. “The problem is that the law hasn’t kept up with the advances in reproductive technology,” states Lawyer Melissa Brissman. http://www.usatoday.com/news/world/story/2012-03-19/in-vitro-citizenship/53656616/1