As a decorated astronaut, Captain Mark Kelly understands the value of health data—though privacy with that data can be elusive. Not only is he okay with the fact that NASA physicians and researchers will be collecting his health information for the rest of his life, but he’s also agreed to participate in NASA’s cutting edge twin study with his brother and fellow astronaut Captain Scott Kelly.
Kelly will likely return to Houston, TX’s Johnson Space Center—which has its own large staff of every kind of medical professional you’d find in a regular hospital—on an annual basis so NASA scientists can study the impact of space travel on the human body. For the twin study, the data collection process is more time sensitive and intense, so researchers often travel to his home in Arizona or to wherever Kelly is traveling at the time to draw blood samples and do other tests.
Documenting astronauts’ health is crucial not only to their individual health but for the scientific community as a whole.
“The space environment, there’s a lot of radiation,” said Kelly in an interview with AHIMA Today. “If you want to go to Mars, people are going to be subject to a lot of radiation over a long period of time. Do you want these crew members to get cancer? What do you do about the damage it’s doing to their cells?”
Kelly has spent more than 50 days in space, having commanded the Space Shuttle Endeavour and the Space Shuttle Discovery. He is also one of only two individuals who have visited the International Space Station on four different occasions. His brother Scott just famously completed a year-long mission aboard the International Space Station, a trip NASA is using to study how Mark and Scott’s health differed on Earth versus in space.
Kelly acknowledges that while having his health data available for public and scientific consumption is “part of the job,” there are elements that give him pause. Major research institutions such as Harvard, Stanford, Johns Hopkins, and others took part in the twin research and are going to be eager to publish the results.
“And I’m certainly supportive of that. But it’s a dilemma—we haven’t been debriefed on the results. But if, in one of the papers it says something like ‘you have a high likelihood of getting a disease or something for some genetic reason,’ I’ve got to really consider if I want that information out there. Not only does it affect myself and my brother, it affects our kids,” Kelly says.
Health Data Openness Has Limits
Kelly and his wife, former Congresswoman Gabrielle “Gabby” Giffords will be speaking at the AHIMA convention during Wednesday’s General Session. On January 8, 2011, Giffords was shot in the head during a constituent event in Tucson, AZ. While Giffords survived the assassination attempt, she left Congress in 2012 to focus on ongoing treatments for her traumatic brain injury and to form the firearm safety advocacy group Americans for Responsible Solutions. The couple now travel the country as part of their advocacy work.
General Session attendees can expect to hear Kelly discuss “lessons learned about my service in the military, flying in combat, being a commander of a space shuttle, the issues we had to deal with surrounding Gabby’s injury,” Kelly says. “So it’s inspirational, informative, attendees will come away with some lessons they can apply to their own lives.”
Giffords and Kelly had the same struggle with health privacy that so many other individuals in the public eye experience during high-profile tragic events like Giffords’ shooting. Kelly says that when Giffords was admitted to the hospital after she was shot, a couple hospital employees lost their jobs for inappropriately viewing her records. “Even an employee of the organization that provided the computer system to the hospital hacked into it to see what her status was, her medical condition. This was in the first few days that she was in the hospital,” Kelly says. “Did I worry about that? I had larger things to worry about at that point. But I think there were a couple individuals that lost their jobs over it. They have very strict procedures.”