Kind of off-topic for this blog, but it's the unavoidable elephant in the room right now. My father died not long after being taken to the hospital this past Wednesday. Here is the obituary.
He had been suffering a long, slow decline for years, and we were really expecting more of the same for the time being. There was nothing new happening that would have led anyone to predict such an abrupt departure. He did have some sort of stroke event recently, but he seemed to be recovering nicely from that. Huong and I were able to spend a long weekend with him only a couple of weeks ago, when we travelled to Ohio to check up on him. We departed unaware that we had just said our last goodbyes.
Sunday, August 21, 2011
Wednesday, August 3, 2011
The Common Rule
The Federal Policy for the Protection of Human Subjects, colloquially referred to as the "Common Rule", regulates federally-funded research that involves doing things to people. All the various departments and agencies of the federal government are supposed to follow the Common Rule, including even the CIA (yeah, right). Last revised about twenty years ago, it is due for some changes, which are currently under review. Many of these changes relate to reporting and auditing issues. Somewhat more interesting is a proposed change to the provisions relating to the disposition of biospecimens collected in the course of such research. Currently, any such biospecimen can continue to be used indefinitely, without the knowledge or permission of the person from whom it was taken, as long as it has been anonymized, i.e., as long as any identifying metadata has been stripped from the specimen.
But since the time the rules were last revised, the field of genomics has developed the ability to identify the individual source of any biospecimen, based on the DNA it contains, increasingly quickly and increasingly inexpensively. In effect, the biospecimen is its own identifying metadata. So the new rule in this area would require that any biospecimen collected in the course of a federally-funded research program must be destroyed at the conclusion of said program, unless the human source of the specimen has explicitly granted permission to retain and/or distribute the specimen for further use.
In my case the point is moot, since I granted such permission when I added myself to the Rare Cancer Genetics Registry.
But since the time the rules were last revised, the field of genomics has developed the ability to identify the individual source of any biospecimen, based on the DNA it contains, increasingly quickly and increasingly inexpensively. In effect, the biospecimen is its own identifying metadata. So the new rule in this area would require that any biospecimen collected in the course of a federally-funded research program must be destroyed at the conclusion of said program, unless the human source of the specimen has explicitly granted permission to retain and/or distribute the specimen for further use.
In my case the point is moot, since I granted such permission when I added myself to the Rare Cancer Genetics Registry.
Monday, August 1, 2011
R.I.P. Tooth #27
Today I crossed the Rubicon and travelled to the oral surgeon's office to have #27 yanked and replaced by an implant topped, for now, by an abutment that will eventually carry a synthetic crown. The whole operation took about an hour and caused, at the time, no pain whatever. Now that the local anesthetic has worn off I'm substantially less comfortable (codeine Tylenol to the rescue), and the crater left by #27 is exceedingly ugly. Now there is nothing to do but wait for the wound to heal and hope that none of the possible negative consequences show up.
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