Presidential Genomics ?
The absolute end of innocence of the medical record
Decades ago, patients records were nearly exclusively on paper. Often illegible, in semi-secured locations, and loosely guarded as a physical "chart" --- these patient records were secure by the standards of the time. The data contained was rarely of monumental relevance.
Anything interesting, delicate or sensitive was deliberately maintained in a "shadow chart." That chart was held, semi-secretly by some department, a lab, an ambulatory care delivery site. It was not available to the emergency department or pharmacy or insurance company. It was definitely out of the province of the medical records department.
Not only are those days over, so is the relative innocence of the data that was contained in those patient records.
Days before the US presidential election, Robert Lee Hotz wrote "
Gene Screen: Will We Vote Against a Candidate's DNA? Office Seekers May One Day Be Pressured to Disclose Genetic Test Results, Giving New Meaning to 'the Body Politic' " (Wall Street Journal, October 29, 2008)
The cost of high-speed genetic analysis is falling fast:
- It took 13 years and $2.7 billion to determine all the DNA in the first complete human genome, finished in 2006.
- Earlier this month, a Mountain View, Calif., company called Complete Genomics announced that by next year it will be able to read out an entire personal genome for $5,000.
The data can and will disclose new information and knowledge:
- During the 20th century, 14 of 19 U.S. presidents suffered significant illnesses while in the White House, from Woodrow Wilson's incapacitating stroke to Ronald Reagan's colon cancer, says Harvard health policy analyst Aaron Kesselheim.
- More often than not, he says, the ailing presidents and their physicians withheld the medical data that would have allowed the public to judge the true extent of their condition and, more importantly, how it affected their decision-making ability.
The privacy situation, covered in HCI Blogs and elsewhere is inexorably changing in complex ways.
- CEOs and others are starting to voluntarily put this information into the public domain. (see the article)
- As the author suggests, other might be compelled to put their genetic information into the public domiain
The stewardship implications for all of us in HCIT? Will it change? Does genomics change our obligations? I'd like to hear your thoughts.